Looking on the Enterolab website, there a lot of test to choose from. Which one is recommended for MC?
Also, my husband says we should get a second opinion on the MC diagnosis. I am not for it. Did anyone else do that?
Thanks in advance.
Jan
Enterolab
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jan,
Most members get either Panel B or Panel A. Personally, I like Panel B because it includes the gene test. However, the gene test is certainly not essential for determining food sensitivities — it's just nice information to have in some cases (depending on which genes you happen to have). If you can justify the cost, Panel C provides information on 11 additional foods.
Many GI docs have problems diagnosing MC, because they miss it (fail to diagnose it). Statistically, the odds of receiving a false negative result are somewhat high. But if you have a positive diagnosis result, then the odds that it is a false positive result are close to zero. I've heard of zillions of cases of MC that were missed (research results show that it is often missed multiple times before some GI doc finally correctly diagnoses it), but I have never heard of a case where MC was diagnosed when the patient did not actually have it.
That said, I'll guarantee that if you try enough GI docs, you will be able to find one who will claim that you do not have MC, because incompetence in diagnosing MC is widespread (though the situation is slowly improving, as more and more GI docs are finally learning how to properly diagnose the disease).
I'm just curious — why would your husband doubt your diagnosis? Do you not have any symptoms? There is a type of MC known as asymptomatic LC (which as the name implies, involves none of the traditional LC symptoms).
You're very welcome,
Tex
Most members get either Panel B or Panel A. Personally, I like Panel B because it includes the gene test. However, the gene test is certainly not essential for determining food sensitivities — it's just nice information to have in some cases (depending on which genes you happen to have). If you can justify the cost, Panel C provides information on 11 additional foods.
Many GI docs have problems diagnosing MC, because they miss it (fail to diagnose it). Statistically, the odds of receiving a false negative result are somewhat high. But if you have a positive diagnosis result, then the odds that it is a false positive result are close to zero. I've heard of zillions of cases of MC that were missed (research results show that it is often missed multiple times before some GI doc finally correctly diagnoses it), but I have never heard of a case where MC was diagnosed when the patient did not actually have it.
That said, I'll guarantee that if you try enough GI docs, you will be able to find one who will claim that you do not have MC, because incompetence in diagnosing MC is widespread (though the situation is slowly improving, as more and more GI docs are finally learning how to properly diagnose the disease).
I'm just curious — why would your husband doubt your diagnosis? Do you not have any symptoms? There is a type of MC known as asymptomatic LC (which as the name implies, involves none of the traditional LC symptoms).
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.
Hi Tex,
Thanks for the info on Enterolab. Regarding my husband's request for a second opinion, and yes I have ALL the symptoms, I think he just expected me to get better faster. It's more out of making sure I got the right diagnosis and that there isn't some miracle cure somewhere. However, I will have him read your post and that should end that discussion cause the last thing I want to do is go see another doctor at this point.
This forum is invaluable.
Thanks again, Jan
Thanks for the info on Enterolab. Regarding my husband's request for a second opinion, and yes I have ALL the symptoms, I think he just expected me to get better faster. It's more out of making sure I got the right diagnosis and that there isn't some miracle cure somewhere. However, I will have him read your post and that should end that discussion cause the last thing I want to do is go see another doctor at this point.
This forum is invaluable.
Thanks again, Jan
Diagnosed with MC - May 2012
Jan,
I certainly understand your husband's concern, and we all wish that a quick, easy "cure" existed, but unfortunately it almost always takes months to a year or more to get this disease under control, and it is rarely easy to do. Most of us have to work hard to track down our food sensitivities and then to avoid them, but until something better is discovered, for most of us, this is the only way to get our life back. Fortunately, it gets easier as we become more familiar with our routine. The only other option is to take powerful drugs for the rest of our life, and that's not very appealing, because of the side effects that they cause, and the fact that for many of us, the drugs are not effective enough by themselves, so we have to change our diet anyway.
And as far as diagnoses are concerned, MC is life-altering (and certainly bad enough), but the other IBDs are much worse to live with, so we consider ourselves lucky that we don't have Crohn's or UC, because with them, powerful drugs are more likely to be necessary.
You're most welcome,
Tex
I certainly understand your husband's concern, and we all wish that a quick, easy "cure" existed, but unfortunately it almost always takes months to a year or more to get this disease under control, and it is rarely easy to do. Most of us have to work hard to track down our food sensitivities and then to avoid them, but until something better is discovered, for most of us, this is the only way to get our life back. Fortunately, it gets easier as we become more familiar with our routine. The only other option is to take powerful drugs for the rest of our life, and that's not very appealing, because of the side effects that they cause, and the fact that for many of us, the drugs are not effective enough by themselves, so we have to change our diet anyway.
And as far as diagnoses are concerned, MC is life-altering (and certainly bad enough), but the other IBDs are much worse to live with, so we consider ourselves lucky that we don't have Crohn's or UC, because with them, powerful drugs are more likely to be necessary.
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.
Hi Doug,
You're referring to a blood test to rule out what's known as selective IgA deficiency. Any primary care doctor can provide the test.
About 1 in 300 people do not produce normal amounts of immunoglobulin A, and for those individuals, any medical tests that rely on the detection and measurement of IgA antibodies will yield false negative results. For example, the screening blood tests used by all doctors to detect celiac disease are based on a combination of IgA and IgE antibodies, and if a patient has selective IgA deficiency, the test will almost always yield a false negative result.
The ELISA tests used by EnteroLab for their stool tests for food sensitivities are also based on IgA antibodies, so they are usually worthless for someone who has selective IgA deficiency (which is the case for at least several members here).
Thank you for bringing that up. While the risk of having an IgA deficiency is not high, it's safer to rule it out before spending a lot of money on IgA-based testing.
Tex
You're referring to a blood test to rule out what's known as selective IgA deficiency. Any primary care doctor can provide the test.
About 1 in 300 people do not produce normal amounts of immunoglobulin A, and for those individuals, any medical tests that rely on the detection and measurement of IgA antibodies will yield false negative results. For example, the screening blood tests used by all doctors to detect celiac disease are based on a combination of IgA and IgE antibodies, and if a patient has selective IgA deficiency, the test will almost always yield a false negative result.
The ELISA tests used by EnteroLab for their stool tests for food sensitivities are also based on IgA antibodies, so they are usually worthless for someone who has selective IgA deficiency (which is the case for at least several members here).
Thank you for bringing that up. While the risk of having an IgA deficiency is not high, it's safer to rule it out before spending a lot of money on IgA-based testing.
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.
Hi Doug. I am one of those unfortunate people who spent the money on panels A and C and then found out that the results were useless ( everything came out extremely low). At that point I took the blood test and found out that I am IgA deficient ( and also low in some IgGs) and that it's probably why I have three autoimmune conditions :( If your doctor is willing to test you, I'd do it.
Leah
Leah
Hi Jan,
For some of us (particularly me) it has taken awhile to heal. I'm a 51 year old female who prior to this disease walked 15 miles per week and had no other health issues. Others have healed much faster since I've been posting. Despite the fact that I never missed work I was under enormous pressure to go on 2nd and 3rd gi opinions appointments and jet around the country to the Mayo Clinic in MN etc. My employer and friends thought I had something like the flu. I ended up making a 2nd opinion appointment pretty much to get everyone off my back but I made it 3 months out. Three months out I was improving so I moved the appointment further out. I didn't go to my second opinion appointment until about 5-1/2 months into healing pretty much just to have a doc tell me not to travel for the upcoming work year. Early on sometimes rate of healing can seem slow but if you look at how you were 3 weeks before you will see improvement. By the time I went to my second opinion appointment I was off of Entocort but I had some other questions about mast cells from having been on this board so my second opinion appointment was productive and I knew from Tex to get a mast cell count on my biopsy slide. My purpose was also to have a relationship with a new GI doc as GI doc #1 told me joint pain did not exist w/ MC and was clueless about celiac genetic link when I told him my mother had celiac.
I think I read some of your previous posts and believe me joint pain, exhaustion, fatigue, dizziness were the norm for me for awhile and common with this disease.
Hope this gives some insite. I was a 4.5 month Entocort user and worked the diet. Some members use other meds or pepto or diet alone. There just isn't a magic bullet out there to speed healing. If I were to do things over I would have gone to bed much much earlier day after day and I would have eliminated yogurt 3 months before I did.
Best wishes, Brandy
For some of us (particularly me) it has taken awhile to heal. I'm a 51 year old female who prior to this disease walked 15 miles per week and had no other health issues. Others have healed much faster since I've been posting. Despite the fact that I never missed work I was under enormous pressure to go on 2nd and 3rd gi opinions appointments and jet around the country to the Mayo Clinic in MN etc. My employer and friends thought I had something like the flu. I ended up making a 2nd opinion appointment pretty much to get everyone off my back but I made it 3 months out. Three months out I was improving so I moved the appointment further out. I didn't go to my second opinion appointment until about 5-1/2 months into healing pretty much just to have a doc tell me not to travel for the upcoming work year. Early on sometimes rate of healing can seem slow but if you look at how you were 3 weeks before you will see improvement. By the time I went to my second opinion appointment I was off of Entocort but I had some other questions about mast cells from having been on this board so my second opinion appointment was productive and I knew from Tex to get a mast cell count on my biopsy slide. My purpose was also to have a relationship with a new GI doc as GI doc #1 told me joint pain did not exist w/ MC and was clueless about celiac genetic link when I told him my mother had celiac.
I think I read some of your previous posts and believe me joint pain, exhaustion, fatigue, dizziness were the norm for me for awhile and common with this disease.
Hope this gives some insite. I was a 4.5 month Entocort user and worked the diet. Some members use other meds or pepto or diet alone. There just isn't a magic bullet out there to speed healing. If I were to do things over I would have gone to bed much much earlier day after day and I would have eliminated yogurt 3 months before I did.
Best wishes, Brandy
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birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Hi Jan,
BE sure to follow Tex's advice.
I had the IgA blood test BEFORE ordering my kit from Enterolab. It came back "OK" so went ahead and ordered the kit. I ordered Panel A & C. I did NOT order the GENE test because I do not have children (I'm 60) so no point.
All the advice I have heard is if you can afford Panel C, get the combinations A&C... otherwise at least get the Panel A. Panel C tests for more foods, but Panel A gives you the basic ones most of MC people have problems with from what I understand. If you get the combination, it's cheaper than if you decide later you want to get Panel C (they give you a combination discount).
Our insurance said they WOULD cover 50% of the lab tests, although we haven't met our deductible yet, but at least it WILL go toward meeting our deductible. If you want to find out from your insurance company, Call Enterolab FIRST and they will give you all the codes that your insurance company will want in order to tell you if they will cover the tests or not. At least with OUR insurance company we have to do the insurance claim because Enterolab is an independent lab and in no one's network. I was surprised that our insurance said they would pay the 50%.
Anyway, I'm now waiting (impatiently) for my kit to come. Anxious to get this going and find out ..... Barb
BE sure to follow Tex's advice.
I had the IgA blood test BEFORE ordering my kit from Enterolab. It came back "OK" so went ahead and ordered the kit. I ordered Panel A & C. I did NOT order the GENE test because I do not have children (I'm 60) so no point.
All the advice I have heard is if you can afford Panel C, get the combinations A&C... otherwise at least get the Panel A. Panel C tests for more foods, but Panel A gives you the basic ones most of MC people have problems with from what I understand. If you get the combination, it's cheaper than if you decide later you want to get Panel C (they give you a combination discount).
Our insurance said they WOULD cover 50% of the lab tests, although we haven't met our deductible yet, but at least it WILL go toward meeting our deductible. If you want to find out from your insurance company, Call Enterolab FIRST and they will give you all the codes that your insurance company will want in order to tell you if they will cover the tests or not. At least with OUR insurance company we have to do the insurance claim because Enterolab is an independent lab and in no one's network. I was surprised that our insurance said they would pay the 50%.
Anyway, I'm now waiting (impatiently) for my kit to come. Anxious to get this going and find out ..... Barb
Diagnosed with Collagenous Colitis November 2012.
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birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Do you know how long it takes to get the Enterolab test kit? I guess I just assumed they woudl Fed Ex it (don't ask me why) but it's been about a week and nothing at my door yet. Anxious because I don't want to run out of Budesonide before I get the results! It's getting too close for comfort. Guess I should call them......
Diagnosed with Collagenous Colitis November 2012.
Hmmm. I think mine was here within a week, but I live fairly close to Dallas, if that makes a difference. But we are having a three-day weekend. Bet you will have it tomorrow!
I have to warn you, it takes more than one day to get the required sample sometimes, and it kinda grossed me out keeping it in the freezer even after putting it in several plastic bags. Just didn't seem right next to the frozen veggies. LOL
Jean
I have to warn you, it takes more than one day to get the required sample sometimes, and it kinda grossed me out keeping it in the freezer even after putting it in several plastic bags. Just didn't seem right next to the frozen veggies. LOL
Jean
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birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
I figured I'd have to deal with that gross stuff. I've had stool samples before that had to be kept in the refrigerator. Yes, it's gross, but we gonna do what we gonna do right?JeanIrene wrote:Hmmm. I think mine was here within a week, but I live fairly close to Dallas, if that makes a difference. But we are having a three-day weekend. Bet you will have it tomorrow!
I have to warn you, it takes more than one day to get the required sample sometimes, and it kinda grossed me out keeping it in the freezer even after putting it in several plastic bags. Just didn't seem right next to the frozen veggies. LOL
Jean
BarbDiagnosed with Collagenous Colitis November 2012.
Hi Jan,
No, it's not necessary to get it, but if you happen to be one of the 1 in 300 people in the general population who have selective IgA deficiency, the test can save you from wasting your money on tests that are based on the detection of IgA antibodies, because those tests won't show valid results for you (if you have selective IgA deficiency). The reason is that if you have selective IgA deficiency, you are very likely to receive false negative results on most of the Enterolab food sensitivity tests. This also applies to the blood tests used to screen for celiac disease. Anyone who has selective IgA deficiency will show false negative results on those tests, also.
IOW, if you should happen to have selective IgA deficiency, the EnteroLab food sensitivity tests won't work for you — meaning that you would have to determine your food sensitivities by trial and error.
Tex
No, it's not necessary to get it, but if you happen to be one of the 1 in 300 people in the general population who have selective IgA deficiency, the test can save you from wasting your money on tests that are based on the detection of IgA antibodies, because those tests won't show valid results for you (if you have selective IgA deficiency). The reason is that if you have selective IgA deficiency, you are very likely to receive false negative results on most of the Enterolab food sensitivity tests. This also applies to the blood tests used to screen for celiac disease. Anyone who has selective IgA deficiency will show false negative results on those tests, also.
IOW, if you should happen to have selective IgA deficiency, the EnteroLab food sensitivity tests won't work for you — meaning that you would have to determine your food sensitivities by trial and error.
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.
-
birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois