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What is the best test to determine if a person has celiac disease? I would like to test for that next, because I am doing my best to avoid gluten, but I could still be getting very small amounts that I don't know about. I know celiacs have to be extremely careful to avoid all gluten, even the tiniest amount.
Also if you need an antibiotic what can we take? I have had a severe sore throat for a couple of days, I will wait a couple more, but if it doesn't get better I'll be seeing my doctor and I don't know if he knows what a person with colitis can safely take.
Thank you,
Barb
The best celiac test? and what antibiotic?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
The best celiac test? and what antibiotic?
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Hi Barb,
The only official tests for celiac disease are the anti-endomysial IgA and anti-tissue transglutaminase IgA tests done on blood samples, plus confirmation by analysis of biopsy samples taken from the small intestine to verify villus atrophy. The problem with these tests is that unless the disease is mature, villus atrophy will not be far enough along to confirm a diagnosis, and unless villus atrophy is extensive, the blood tests will almost always be negative. If you have been on a GF diet for more than a few months, the blood tests will almost surely be negative.
The best way to determine gluten sensitivity is an anti-gliadin antibody stool test at EnteroLab. That test is so sensitive that it can reliably detect gluten sensitivity at least a year after gluten has been removed from the diet, and in many cases, it can still detect antibodies up to two years after gluten has been removed from the diet. If you have been on a GF diet for years, a positive test result at EnteroLab will tell you that you're still getting traces of gluten in your diet. Note that gluten sensitivity is not the same as celiac disease, but if you are sensitive to gluten, then a celiac diagnosis is a moot point, since the treatment is the same.
The safest antibiotics as far as MC is concerned, are the fluoroquinolones, including Ciprofloxacin. In fact, for most of us, Cipro will bring remission if we are having a flare. Unfortunately, in such a situation, the symptoms will almost always return as soon as the treatment is discontinued.
The second best choice seems to be zithromycin (Z-pack). Of course, these antibiotics are not always effective for every strain of bacteria, so your doctor may disagree with these choices, but these are both broad-spectrum antibiotics, so they are effective for many types of bacteria, and they are less likely to trigger an MC flare than the other antibiotic options.
Tex
The only official tests for celiac disease are the anti-endomysial IgA and anti-tissue transglutaminase IgA tests done on blood samples, plus confirmation by analysis of biopsy samples taken from the small intestine to verify villus atrophy. The problem with these tests is that unless the disease is mature, villus atrophy will not be far enough along to confirm a diagnosis, and unless villus atrophy is extensive, the blood tests will almost always be negative. If you have been on a GF diet for more than a few months, the blood tests will almost surely be negative.
The best way to determine gluten sensitivity is an anti-gliadin antibody stool test at EnteroLab. That test is so sensitive that it can reliably detect gluten sensitivity at least a year after gluten has been removed from the diet, and in many cases, it can still detect antibodies up to two years after gluten has been removed from the diet. If you have been on a GF diet for years, a positive test result at EnteroLab will tell you that you're still getting traces of gluten in your diet. Note that gluten sensitivity is not the same as celiac disease, but if you are sensitive to gluten, then a celiac diagnosis is a moot point, since the treatment is the same.
The safest antibiotics as far as MC is concerned, are the fluoroquinolones, including Ciprofloxacin. In fact, for most of us, Cipro will bring remission if we are having a flare. Unfortunately, in such a situation, the symptoms will almost always return as soon as the treatment is discontinued.
The second best choice seems to be zithromycin (Z-pack). Of course, these antibiotics are not always effective for every strain of bacteria, so your doctor may disagree with these choices, but these are both broad-spectrum antibiotics, so they are effective for many types of bacteria, and they are less likely to trigger an MC flare than the other antibiotic options.
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 have read if you have celiac disease you can't use the same toaster, kitchen utensils, cutting boards, some cookware, ect.., as your partner. You are suppose to be that careful of gluten (not a speck of it), if that is the case wouldn't it be a good idea to be tested for celiac? Right now I don't worry about using the same toaster or if I get the tinniest amount.
Barb
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Barb,
The sad truth is that many of us are more sensitive to gluten than the average celiac, and unless you have fully-developed celiac disease, and have been eating plenty of gluten for at least the last several months, the celiac tests will almost always show a negative result. The celiac tests are only capable of accurately diagnosing somewhere between one in ten to one in twenty (depending on which source you use) of the people who actually have celiac disease, so it's hardly worth getting excited about.
Doctors desperately need a reliable and accurate way to diagnose celiac disease. The current state of medical technology regarding gluten-sensitivity and/or celiac disease, can be pretty well summed with two words: It sucks!
Yes, if you haven't been following a GF diet, you might as well get the celiac tests if you would like to have a celiac diagnosis, but don't expect to see a positive test result, because very few members here have received a positive celiac test result, and those members received a positive result because they actually had mature celiac disease (and most of them had been living with it for years).
Tex
The sad truth is that many of us are more sensitive to gluten than the average celiac, and unless you have fully-developed celiac disease, and have been eating plenty of gluten for at least the last several months, the celiac tests will almost always show a negative result. The celiac tests are only capable of accurately diagnosing somewhere between one in ten to one in twenty (depending on which source you use) of the people who actually have celiac disease, so it's hardly worth getting excited about.
Doctors desperately need a reliable and accurate way to diagnose celiac disease. The current state of medical technology regarding gluten-sensitivity and/or celiac disease, can be pretty well summed with two words: It sucks!
Yes, if you haven't been following a GF diet, you might as well get the celiac tests if you would like to have a celiac diagnosis, but don't expect to see a positive test result, because very few members here have received a positive celiac test result, and those members received a positive result because they actually had mature celiac disease (and most of them had been living with it for years).
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 Tex,
I guess I won't waist my money for a celiac test, but what are your thoughts on using the same toaster or cutting boards or anything your partner uses that might have gluten on it?
I had my Entero Lab tests done 11/11, and had been gluten free before that. This has been hard on my husband too and he wants me to be retested (he thinks it could be wrong), I know you have to wait at least 2 years, are there other tests you have used other than Entero Lab?
Thanks,
Barb
I guess I won't waist my money for a celiac test, but what are your thoughts on using the same toaster or cutting boards or anything your partner uses that might have gluten on it?
I had my Entero Lab tests done 11/11, and had been gluten free before that. This has been hard on my husband too and he wants me to be retested (he thinks it could be wrong), I know you have to wait at least 2 years, are there other tests you have used other than Entero Lab?
Thanks,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Barb,
You really need your own toaster, because toasters are notorious for collecting bread crumbs. Some members use a countertop toaster oven, and use foil under their GF bread or buns to keep them safe. Cutting boards are impossible to clean well enough to safely use, once they've been exposed to gluten. That also applies to wooden spoons, wooden bowls, and rolling pins, because wood is so porous. Many non-stick liners in pots and pans are also relatively porous. It's claimed that cast iron pots and pans can also retain gluten. Also, any pans used for baking have to be cleaned and inspected extremely carefully if used for GF baking, because they often contain baked-on residues that are not removed during washing.
Most of us react to very tiny (trace) amounts of gluten or other foods to which we are sensitive, so cross-contamination is a major risk.
EnteroLab is really the only game in town for detecting gluten, casein, soy, and egg sensitivities. Their tests are several orders of magnitude more sensitive, accurate, and reliable than any other tests available, anywhere in the world. The mediator release testing offered in conjunction with the MRT/LEAP program has been useful for many members here, when used to help track down secondary food sensitivities, but they are notorious for missing the big ones, such as gluten and casein, unfortunately.
Were your EnteroLab test results positive or negative when you had them done last December?
You're most welcome,
Tex
You really need your own toaster, because toasters are notorious for collecting bread crumbs. Some members use a countertop toaster oven, and use foil under their GF bread or buns to keep them safe. Cutting boards are impossible to clean well enough to safely use, once they've been exposed to gluten. That also applies to wooden spoons, wooden bowls, and rolling pins, because wood is so porous. Many non-stick liners in pots and pans are also relatively porous. It's claimed that cast iron pots and pans can also retain gluten. Also, any pans used for baking have to be cleaned and inspected extremely carefully if used for GF baking, because they often contain baked-on residues that are not removed during washing.
Most of us react to very tiny (trace) amounts of gluten or other foods to which we are sensitive, so cross-contamination is a major risk.
EnteroLab is really the only game in town for detecting gluten, casein, soy, and egg sensitivities. Their tests are several orders of magnitude more sensitive, accurate, and reliable than any other tests available, anywhere in the world. The mediator release testing offered in conjunction with the MRT/LEAP program has been useful for many members here, when used to help track down secondary food sensitivities, but they are notorious for missing the big ones, such as gluten and casein, unfortunately.
Were your EnteroLab test results positive or negative when you had them done last December?
You're most 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.
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MaggieRedwings
- King Penguin
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- Location: SE Pennsylvania
I don't react to cross contamination of gluten, I don't know about casein.
Tex,
My test were gliadin 44 units, casein 18 units, egg 10 units, and soy 13 units. I recently have reintroduced eggs and organic chicken and no problem. Last week I tried small amount of hard cheese and didn't have a reaction, also some popcorn. All of the other foods Entero lab said I was showing a reaction to I stayed away from for 5 months, but lately I have been eating small amounts.
In my research I thought I read if you have Celiac or Crohns disease you need to worry about cross contamination, because you would have a greater chance to get colon cancer. That's why I questioned about Celiac test. I guess that was my concern, especially if I am not physically having a reaction.
Thanks,
Barb
Tex,
My test were gliadin 44 units, casein 18 units, egg 10 units, and soy 13 units. I recently have reintroduced eggs and organic chicken and no problem. Last week I tried small amount of hard cheese and didn't have a reaction, also some popcorn. All of the other foods Entero lab said I was showing a reaction to I stayed away from for 5 months, but lately I have been eating small amounts.
In my research I thought I read if you have Celiac or Crohns disease you need to worry about cross contamination, because you would have a greater chance to get colon cancer. That's why I questioned about Celiac test. I guess that was my concern, especially if I am not physically having a reaction.
Thanks,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Hi Barb,
It's the inflammation caused by gluten that causes the increased cancer risk in celiacs, not the celiac sprue, per se. You are probably just like me. Some of us are capable of building up a tolerance to some of our sensitivities. I developed a tolerance for casein, (I don't have any significant clinical symptoms from casein). However, I still produce antibodies to casein (I had an EnteroLab test last December), so I was clearly subjecting myself to sub-clinical inflammation. After I got the test results, I promptly cut all dairy products back out of my diet (even though I could eat all I wanted of them without any symptoms). Many celiacs are also asymptomatic of gluten, and they can eat it without any clinical symptoms.
When you say that you don't react to cross-contamination by gluten, you mean that you don't produce any clinical symptoms. However, unfortunately, that does not mean that you are not reacting to it. If you are producing antibodies to it, you are reacting to it (on a sub-clinical level).
If we continue to eat foods to which we are sensitive, (despite the fact that we're asymptomatic), we continue to produce antibodies, and that almost surely exposes us to an increased risk of non-Hodgkins lymphoma (similar to untreated celiacs). If you doubt that you are producing antibodies to casein, gluten, eggs, and soy, send another sample to EnteroLab for confirmation. My guess is that your test results will be higher than the first time, because antibody levels continue to increase as long as we are exposed to those antigens.
Here's a reference that demonstrates why immunotherapy-induced tolerance can eliminate clinical symptoms while allowing intestinal inflammation to continue to increase:
http://www.jimmunol.org/cgi/content/mee ... acts/125.7
Tex
It's the inflammation caused by gluten that causes the increased cancer risk in celiacs, not the celiac sprue, per se. You are probably just like me. Some of us are capable of building up a tolerance to some of our sensitivities. I developed a tolerance for casein, (I don't have any significant clinical symptoms from casein). However, I still produce antibodies to casein (I had an EnteroLab test last December), so I was clearly subjecting myself to sub-clinical inflammation. After I got the test results, I promptly cut all dairy products back out of my diet (even though I could eat all I wanted of them without any symptoms). Many celiacs are also asymptomatic of gluten, and they can eat it without any clinical symptoms.
When you say that you don't react to cross-contamination by gluten, you mean that you don't produce any clinical symptoms. However, unfortunately, that does not mean that you are not reacting to it. If you are producing antibodies to it, you are reacting to it (on a sub-clinical level).
If we continue to eat foods to which we are sensitive, (despite the fact that we're asymptomatic), we continue to produce antibodies, and that almost surely exposes us to an increased risk of non-Hodgkins lymphoma (similar to untreated celiacs). If you doubt that you are producing antibodies to casein, gluten, eggs, and soy, send another sample to EnteroLab for confirmation. My guess is that your test results will be higher than the first time, because antibody levels continue to increase as long as we are exposed to those antigens.
Here's a reference that demonstrates why immunotherapy-induced tolerance can eliminate clinical symptoms while allowing intestinal inflammation to continue to increase:
http://www.jimmunol.org/cgi/content/mee ... acts/125.7
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 did not realize we had a greater chance of non Hodgkins lymphoma, my sister had it twice.
I just might redo the test to satisfy my husband and to see where I am at. What all tests would you recommend taking? What is the MRT? I want to get back to you about a couple of tests my doctor wants me to take to see if or what you think of them , I have to look them up.
So anyibodies produce inflammation and that is the biggest problem from the food sensitivities?
This diet is so depressing, you can't even go out to dinner with friends.
Thanks for your help.
Barb
I just might redo the test to satisfy my husband and to see where I am at. What all tests would you recommend taking? What is the MRT? I want to get back to you about a couple of tests my doctor wants me to take to see if or what you think of them , I have to look them up.
So anyibodies produce inflammation and that is the biggest problem from the food sensitivities?
This diet is so depressing, you can't even go out to dinner with friends.
Thanks for your help.
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Hey Barb,Barb1 wrote:I did not realize we had a greater chance of non Hodgkins lymphoma, my sister had it twice.
I just might redo the test to satisfy my husband and to see where I am at. What all tests would you recommend taking? What is the MRT? I want to get back to you about a couple of tests my doctor wants me to take to see if or what you think of them , I have to look them up.
So anyibodies produce inflammation and that is the biggest problem from the food sensitivities?
This diet is so depressing, you can't even go out to dinner with friends.
Thanks for your help.
Barb
I can so relate to your last statement, "You can't even go out to dinner with friends". I have relatives staying with me this week and tried to eat out with disastrous consequences. I am resigned to the fact that I need to just continue cooking and bringing my own food with me. It is very difficult but it's so not worth the consequences for me!
Barb,
It's not a large risk (no member here has ever developed it, to my knowledge), but we apparently have the same elevated risk as untreated celiacs (if we're sensitive to gluten and don't avoid it). The carcinogenic effects of other food sensitivities are unresearched, but there is a good chance that they may have the same effect as gluten in the long run, if untreated. Does your sister have an IBD? Most people probably don't think of it this way, but celiac disease is also an IBD.
I would order whatever tests I wanted to verify. Have you had the DNA test? I'm just guessing, but I have a hunch that those of us who have a celiac gene might have a higher risk than others (but that's just a hunch, with no evidence to support it).
MRT stands for mediator release testing. That test does not test for IgA or any other type of antibodies. It tests for general reactions connected with food sensitivities. It involves measuring the difference in the solids to liquids ratio in blood that has been exposed to specific food antigens. MRT often misses sensitivities to gluten, casein, and soy, but it can be helpful for picking up minor sensitivities to foods for which EnteroLab does not offer a test.
The antibodies themselves don't directly cause inflammation (they're more like messengers yelling, "Fire!"), but they trigger other immune system responses that cause inflammation. One thing that's often overlooked is the fact that it's also possible to have inflammation without producing antibodies.
Tex
It's not a large risk (no member here has ever developed it, to my knowledge), but we apparently have the same elevated risk as untreated celiacs (if we're sensitive to gluten and don't avoid it). The carcinogenic effects of other food sensitivities are unresearched, but there is a good chance that they may have the same effect as gluten in the long run, if untreated. Does your sister have an IBD? Most people probably don't think of it this way, but celiac disease is also an IBD.
I would order whatever tests I wanted to verify. Have you had the DNA test? I'm just guessing, but I have a hunch that those of us who have a celiac gene might have a higher risk than others (but that's just a hunch, with no evidence to support it).
MRT stands for mediator release testing. That test does not test for IgA or any other type of antibodies. It tests for general reactions connected with food sensitivities. It involves measuring the difference in the solids to liquids ratio in blood that has been exposed to specific food antigens. MRT often misses sensitivities to gluten, casein, and soy, but it can be helpful for picking up minor sensitivities to foods for which EnteroLab does not offer a test.
The antibodies themselves don't directly cause inflammation (they're more like messengers yelling, "Fire!"), but they trigger other immune system responses that cause inflammation. One thing that's often overlooked is the fact that it's also possible to have inflammation without producing antibodies.
I hear you. I very rarely eat away from home, anymore. And when I do, I usually take something to eat, or I do the cooking (when camping out, for example). I haven't been to a restaurant in a couple of years or more.Barb wrote:This diet is so depressing, you can't even go out to dinner with friends.
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 hear you Barb! I have been able to go out a little- mostly mexican. I can also order a burger with no bun and now that I can eat some salad, I order that with oil and vinegar.... or a small amount of sweet potato fries. It's a jungle out there!
Leah
PS Wow Tex, I didn't know about the non-hodgkins connection either. That's kind of scary. Am I more prone or less prone if I don't produce the antibodies?
Leah
PS Wow Tex, I didn't know about the non-hodgkins connection either. That's kind of scary. Am I more prone or less prone if I don't produce the antibodies?
Hi Leah,
Not much research is done on this, but the risk for someone in the general population is only a small fraction of one percent, so even though untreated gluten sensitivity increases the risk, our absolute risk is still very low -- much less than 1% as I recall. If we stick to a GF diet, after a few years our risk declines to that of the general public. IOW, it's only of concern for someone who is sensitive to gluten but continues to eat it at least occasionally, on a long-term basis.
The risk is very likely directly correlated with the degree of inflammation, so even asymptomatic celiacs who continue to occasionally eat gluten probably have a lower risk than their cohorts who eat the same amount of gluten but develop symptoms. I'm just guessing about that lower risk for asymptomatic patients -- I could be wrong, because not much research has been done in this area. I figured my anti-casein antibody level was way too high to ignore (24) so I cut dairy out of my diet.
I'm not aware of any research concerning a connection with selective IgA deficiency, but I doubt that selective IgA deficiency would directly affect any risk of lymphoma. Avoiding your food (and drug or chemical) sensitivities should be sufficient for controlling that risk.
Tex
Not much research is done on this, but the risk for someone in the general population is only a small fraction of one percent, so even though untreated gluten sensitivity increases the risk, our absolute risk is still very low -- much less than 1% as I recall. If we stick to a GF diet, after a few years our risk declines to that of the general public. IOW, it's only of concern for someone who is sensitive to gluten but continues to eat it at least occasionally, on a long-term basis.
The risk is very likely directly correlated with the degree of inflammation, so even asymptomatic celiacs who continue to occasionally eat gluten probably have a lower risk than their cohorts who eat the same amount of gluten but develop symptoms. I'm just guessing about that lower risk for asymptomatic patients -- I could be wrong, because not much research has been done in this area. I figured my anti-casein antibody level was way too high to ignore (24) so I cut dairy out of my diet.
I'm not aware of any research concerning a connection with selective IgA deficiency, but I doubt that selective IgA deficiency would directly affect any risk of lymphoma. Avoiding your food (and drug or chemical) sensitivities should be sufficient for controlling that risk.
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.