BearcatRx,
If you do Enterolab, be sure you have been off Entocort for a number of months. The first time I did Enterolab I had just come off Entocort and did not show many reactions to foods, at that time I had just found this forum and had not made many diet changes.
I decided to retest with Enterolab 6 months later, because I was not making progress with diet changes, and my tests came back positive to many more foods. I also did gene testing HLA-DBQ1 through Enterolab and found that I had the most common celiac gene, which gave me even more of a reason to avoid gluten.
Over the past 4 years I have tried all of the possible medications, and they helped for a while but symptoms always came back when the dose was lower or the medication just became ineffective, so far diet changes have given me the most symptom relief without side effects.
Update, ineffective treatment
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That was one question I had that I didn't find an answer to on the EnteroLab website: medication washout period. Considering I am still experiencing symptoms even while on Entocort I would imagine those antibodies will still be present. Although if that's the case and I need to be off it for a few months I should probably just cancel the order.
When I first did the test I had been on Entocort for 6 months but only came back reacting to gluten. When I retested, 6 months after stopping Entocort, I had reactions to all major allergens, which made sense since I was still having significant symptoms and was only avoiding gluten.
I don't think you have to wait 6 months, but several months may be helpful.
I don't think you have to wait 6 months, but several months may be helpful.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Bearcat,
Donna is right on target. One option for possibly getting around this issue is to ask your doctor to test you for selective IgA deficiency. I agree with you that since you are still reacting, you are probably still producing antibodies. That said, it's possible for the immune system to trigger reactions without the production of antibodies, for example, mast cell activation disorder (MCAD). The blood test will show whether or not your immune system is currently capable of producing a normal amount of immunoglobulin A antibodies. If your result is in the normal range, you should be able to get valid results on the Enterolab stool tests.
The fly in the ointment with this procedure is that anti-gliadin antibodies have a 120-day half-life, whereas antibodies to most other foods have a half-life of approximately 6 days. IOW, it takes a long time for the level of anti-gliadin antibodies to decay, suggesting that you are probably still producing plenty of antibodies to gluten, but you may not be producing antibodies to the other food sensitivities. The EnteroLab stool tests are so sensitive that in most cases they are typically capable of detecting anti-gliadin antibodies up to 2 years after gluten has been totally withdrawn from the diet, for example, and the tests can detect anti-gliadin antibodies for at least a year after gluten has been withdrawn from the diet in virtually all cases.
If I were in your situation, I would either ask for a blood test to make sure that my immune system was not suppressed, or I would only order a single test from EnteroLab, for anti-gliadin antibodies. Even if your immune system is suppressed, you should still show an elevated level of anti-gliadin antibodies. It will just be significantly lower than it would have been if you had not been taking a corticosteroid.
If you only order a gluten test, and the test result is positive, then after you have been avoiding gluten for a few months, you can experiment with avoiding other foods, or better yet, simply do an elimination diet for a few weeks and then test foods by adding them back into your diet, one at a time.
But IMO the best option would be to try an IgA blood test, because that's a quick and easy test, and it will answer an important question, namely, "Will you be able to get valid test results on an IgA antibody-based stool test"?
Tex
Donna is right on target. One option for possibly getting around this issue is to ask your doctor to test you for selective IgA deficiency. I agree with you that since you are still reacting, you are probably still producing antibodies. That said, it's possible for the immune system to trigger reactions without the production of antibodies, for example, mast cell activation disorder (MCAD). The blood test will show whether or not your immune system is currently capable of producing a normal amount of immunoglobulin A antibodies. If your result is in the normal range, you should be able to get valid results on the Enterolab stool tests.
The fly in the ointment with this procedure is that anti-gliadin antibodies have a 120-day half-life, whereas antibodies to most other foods have a half-life of approximately 6 days. IOW, it takes a long time for the level of anti-gliadin antibodies to decay, suggesting that you are probably still producing plenty of antibodies to gluten, but you may not be producing antibodies to the other food sensitivities. The EnteroLab stool tests are so sensitive that in most cases they are typically capable of detecting anti-gliadin antibodies up to 2 years after gluten has been totally withdrawn from the diet, for example, and the tests can detect anti-gliadin antibodies for at least a year after gluten has been withdrawn from the diet in virtually all cases.
If I were in your situation, I would either ask for a blood test to make sure that my immune system was not suppressed, or I would only order a single test from EnteroLab, for anti-gliadin antibodies. Even if your immune system is suppressed, you should still show an elevated level of anti-gliadin antibodies. It will just be significantly lower than it would have been if you had not been taking a corticosteroid.
If you only order a gluten test, and the test result is positive, then after you have been avoiding gluten for a few months, you can experiment with avoiding other foods, or better yet, simply do an elimination diet for a few weeks and then test foods by adding them back into your diet, one at a time.
But IMO the best option would be to try an IgA blood test, because that's a quick and easy test, and it will answer an important question, namely, "Will you be able to get valid test results on an IgA antibody-based stool test"?
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. Obviously I can't guarantee what will happen, because we're all different in our response rates to various tests, medications, diets, etc. But so far at least, those of us who have shown an ability to produce normal rates of immunoglobulin A have found the EnteroLab test results to be accurate and reliable.BearcatRx wrote:Tex,
So if I get this test done and I am within normal limits, I should go ahead and continue with the full A1+C1 testing? I don't want to spend 560 dollars only to have to sit around another six months and then spend another 560.
I can't tell you what to do (I'm not a licensed medical practitioner). I can only tell you that's what I would do if I were in your situation and I wanted to resolve my symptoms as quickly as is reasonably practical.
I'm not sure how long you have been taking budesonide. If it's much more than 8 or 9 months, I would be more inclined to just order a gluten test, and begin an elimination diet (because your immune system will surely have at least a moderate level of suppression). If you should test negative to gluten antibodies, the chances are very good that you might not be sensitive to any other foods (with the exception of lactose, while you have enteritis). If you test positive to anti-gliadin antibodies however, that opens the door to various other food sensitivities, especially casein and soy. That test would be a relatively cheap, relatively reliable (because anti-gliadin antibodies are so persistent) test to at least get you pointed in the right direction on possible diet changes.
IOW, a simple anti-gliadin stool test would be an economical way to hedge your bet. That said, I believe I would still get an IgA blood test, just to make sure that my immune system is still capable of producing enough antibodies to qualify for at least the minimum level of the normal range. The higher your IgA response, the better, of course, on that test.
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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Sheila
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Getting Enterolab results can be shocking. I never would have given up gluten, soy, dairy, and eggs on my own initiative. When you know what makes you sick, you have a shot at healing. Otherwise, you're just guessing and good luck with that. Taking the Enterolab test was the second best decision I made. Finding Potty People and taking the great advice to heart was the best decision I made when I was so sick.
Sheila W
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
I'm not doubting the decision to go ahead with the EnteroLab testing. I'm just concerned that it won't reflect my actual food sensitivities because I've been taking Entocort for the greater part of 90 days. This puts me in a bad spot because I'm going to have to go without treatment it seems for at least a month before I can get a good understanding of the foods I need to avoid.
At only 90 days, (most of it at only 6 mg per day), it's very unlikely that your immune system is significantly suppressed. If it were twice that amount, your status would be questionable. At a year, your immune system would surely be significantly suppressed. But 90 days (with part of it at a reduced dosage) shouldn't cause any problems for the test results.
You should still be able to get valid results at this point. Besides, avoiding Entocort for a month is not going to make a significant difference on your immune system recovery. You would need to avoid it for more like 6—8 months.
If I were in your situation I would do the tests ASAP.
Tex
You should still be able to get valid results at this point. Besides, avoiding Entocort for a month is not going to make a significant difference on your immune system recovery. You would need to avoid it for more like 6—8 months.
If I were in your situation I would do the tests ASAP.
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've been on varying doses of 6mg and 9mg, but it has primarily been 9mg. I would say I've been on it for no more than 120 days and I stopped it two days ago (not that it will make any difference as far as the EnteroLab is concerned). I will go ahead and proceed with the testing. I ordered it two days ago so hopefully I should be receiving the matierals soon.tex wrote:At only 90 days, (most of it at only 6 mg per day), it's very unlikely that your immune system is significantly suppressed. If it were twice that amount, your status would be questionable. At a year, your immune system would surely be significantly suppressed. But 90 days (with part of it at a reduced dosage) shouldn't cause any problems for the test results.
You should still be able to get valid results at this point. Besides, avoiding Entocort for a month is not going to make a significant difference on your immune system recovery. You would need to avoid it for more like 6—8 months.
If I were in your situation I would do the tests ASAP.
Tex
When I had my first Enterolab test done, 4/2013, I had been on only 3 mg/day of Entocort for 2 months before the test and I was having significant MC symptoms. Even though I was having the symptoms my results showed low reactivity to the foods except gluten. I was eating a regular diet with no restrictions.
I Have done the tests 2x since then, 10/2013 & 8/2014 and have gotten significantly higher reactive results.
I am pointing this out because I was mislead by my results the first time.
I Have done the tests 2x since then, 10/2013 & 8/2014 and have gotten significantly higher reactive results.
I am pointing this out because I was mislead by my results the first time.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Seems like a bit of a catch 22. Entocort doesn't seem to be working and I may not get an accurate sensitivity panel from Enterolab. Feels like I'm in a holding pattern, not capable of making much progress towards recovery.dfpowell wrote:When I had my first Enterolab test done, 4/2013, I had been on only 3 mg/day of Entocort for 2 months before the test and I was having significant MC symptoms. Even though I was having the symptoms my results showed low reactivity to the foods except gluten. I was eating a regular diet with no restrictions.
I Have done the tests 2x since then, 10/2013 & 8/2014 and have gotten significantly higher reactive results.
I am pointing this out because I was mislead by my results the first time.
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I have never been on Entocort and I found the Enterolab tests extremely helpful, but because my symptoms were severe and I wanted to get them under control as quickly as possible I eliminated gluten, dairy, soy and eggs immediately before I got the results back from Enterolab, before I even sent the kit back. I identified a few foods I felt were safe, mostly lamb patties and kale chips (chopped kale and olive oil baked in the over) at first and ate them every day. So when I got my enterolab results back it mostly just confirmed what I suspected. The enterolab testing is very helpful but a very strict elimination diet can work as well.
Jean
Jean
Bearcat,
What Donna says is certainly true in some cases. It depends on our antibody levels at the beginning, and it especially depends on how strongly (or weakly) corticosteroids affect our immune system. We are all different.
But what Jean described is definitely a practical alternative, and it can be initiated immediately.
Tex
What Donna says is certainly true in some cases. It depends on our antibody levels at the beginning, and it especially depends on how strongly (or weakly) corticosteroids affect our immune system. We are all different.
It's uncertainty and lack of information that causes us to feel frustrated and hopeless. As soon as we have a plan in place, we feel better, and we're less stressed. The selective IgA deficiency blood test would get you out of that frustrating holding pattern, one way or the other.Bearcat wrote:Feels like I'm in a holding pattern, not capable of making much progress towards recovery.
But what Jean described is definitely a practical alternative, and it can be initiated immediately.
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.