Visit the Microscopic Colitis Foundation Website
Hi all - got my Enterolab results last week while I was away from my computer. Feel free to post them for whatever they are worth. I know I should be happy that my numbers are low but it's so frustrating to keep not knowing what is wrong with me. I know that I have MC because of a colonoscopy. I have been gluten free since early June and still not feeling great. I also have been avoiding soy, dairy, nuts, corn, oats, and eggs (basically). I did the A and C panel because I wanted to find out about corn and nuts, which seem to bother me. I didn't do anything else like the gene testing, because this was expensive enough, but I am wondering - what is my next step? More testing? Endocort? I know I shouldn't be complaining since many of you have numbers that are much higher (so much higher) but I can't stand being in the bathroom and feeling sick all the time.
Sorry to be complaining.
Lisa
Final Laboratory Report
Date: 7/21/2011
A + C) Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel
(Combines Panels A and C at a discounted price)
Mean Value 11 Antigenic Foods 4 Units (Normal Range is less than 10 Units)
Fecal Anti-gliadin IgA 9 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 6 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 6 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 7 Units (Normal Range is less than 10 Units)
Interpretation of Mean Value 11 Antigenic Foods: A mean value of 4 Units indicates that overall, on average, your food sensitivity reactions are mild. However, there was some detectable evidence of immunologic sensitivity to one or more of these antigenic foods.
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food toward which you displayed most immunologic reactivity: Almond
Food for which there was no significant immunologic reactivity: Cashew, Walnut, Oat, Corn, Tuna, White potato, Chicken, Beef, Pork, Rice
Enterolab results - frustrating
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lisa,
I'm sorry you didn't get clear answers from your results. But you sure don't have to apologize - feeling awful is feeling awful. I don't believe those of us with 'out of the park' scores on certain foods necessary feel worse than you do. We just have a little proof of why.
There are a couple of reasons why you might test 'normal' on these tests, and still react to gluten/dairy/other things you have been feeling might be to blame.
One reason might be that you are low in IgA, which is what these particular tests measure. At least one or two members since I joined have learned that they are IgA deficient, and have had 'normal' test results for foods they know for certain make them sick. Another possibility is that your body's reaction to these foods is not via IgA, but some other immune response (another Ig? or T-cells?)... And of course it is possible that you genuinely do not have a reaction to those foods. But I believe you, more than I believe the tests.
I know you are trying to do everything you can, and to do an elimination diet, you'd like some guidance on what to eliminate. I'm truly sorry these tests didn't give you clarity. I am planning to do MRT testing, which tests many more foods, and by a different method.
As far as the gene testing - if it showed that you have celiac or other gluten sensitive genes, then you would know for sure about gluten. But you have already eliminated gluten, and it wouldn't tell you which other foods, if any, you are sensitive to. So maybe you saved that money for a reason (whether it's MRT testing or a prescription, or... something you haven't determined yet).
I hope you get other good thoughts on where to look next for some relief. Meanwhile, you go right ahead and complain. Feeling frustrated on top of feeling sick is totally understandable.
All my best,
Sara
I'm sorry you didn't get clear answers from your results. But you sure don't have to apologize - feeling awful is feeling awful. I don't believe those of us with 'out of the park' scores on certain foods necessary feel worse than you do. We just have a little proof of why.
There are a couple of reasons why you might test 'normal' on these tests, and still react to gluten/dairy/other things you have been feeling might be to blame.
One reason might be that you are low in IgA, which is what these particular tests measure. At least one or two members since I joined have learned that they are IgA deficient, and have had 'normal' test results for foods they know for certain make them sick. Another possibility is that your body's reaction to these foods is not via IgA, but some other immune response (another Ig? or T-cells?)... And of course it is possible that you genuinely do not have a reaction to those foods. But I believe you, more than I believe the tests.
I know you are trying to do everything you can, and to do an elimination diet, you'd like some guidance on what to eliminate. I'm truly sorry these tests didn't give you clarity. I am planning to do MRT testing, which tests many more foods, and by a different method.
As far as the gene testing - if it showed that you have celiac or other gluten sensitive genes, then you would know for sure about gluten. But you have already eliminated gluten, and it wouldn't tell you which other foods, if any, you are sensitive to. So maybe you saved that money for a reason (whether it's MRT testing or a prescription, or... something you haven't determined yet).
I hope you get other good thoughts on where to look next for some relief. Meanwhile, you go right ahead and complain. Feeling frustrated on top of feeling sick is totally understandable.
All my best,
Sara
Lisa,
Hmmmmm. That certainly is an unexpected turn of events. Of course, it's certainly possible, (as Sara pointed out), that you might have selective IgA deficiency, (an inability to produce normal amounts of IgA antibodies). According to statistics, approximately 1 in 300 people have that problem. It might be worth a try to ask your PCP to check your blood for possible selective IgA deficiency.
If you are capable of producing normal amounts of IgA, though, then that raises the possibility that your MC might be drug induced, (are you taking any NSAIDs, PPIs, SSRIs, statins, bisphosphonates, etc.?), or a parasite or bacterial pathogen of some sort might be the problem.
The other possibility would be mast cell issues. A few of us have mastocytic enterocolitis, (meaning that we have excessive numbers of mast cells in our intestines), which trigger the symptoms - this is a rather rare condition, though. Quite a few of us react to foods high in histamines, and/or foods that trigger mast cell degranulation, (resulting in the release of histamines). This seems to be somewhat common among the members, here.
Another trigger for some members is hormone supplements, such as HRT, or birth control options, (whether oral, or administered by transdermal patches).
I wish I had a simple explanation. Hopefully, someone else will be able to shed some light on this situation.
Thanks. I'll add your results to our database.
Tex
Hmmmmm. That certainly is an unexpected turn of events. Of course, it's certainly possible, (as Sara pointed out), that you might have selective IgA deficiency, (an inability to produce normal amounts of IgA antibodies). According to statistics, approximately 1 in 300 people have that problem. It might be worth a try to ask your PCP to check your blood for possible selective IgA deficiency.
If you are capable of producing normal amounts of IgA, though, then that raises the possibility that your MC might be drug induced, (are you taking any NSAIDs, PPIs, SSRIs, statins, bisphosphonates, etc.?), or a parasite or bacterial pathogen of some sort might be the problem.
The other possibility would be mast cell issues. A few of us have mastocytic enterocolitis, (meaning that we have excessive numbers of mast cells in our intestines), which trigger the symptoms - this is a rather rare condition, though. Quite a few of us react to foods high in histamines, and/or foods that trigger mast cell degranulation, (resulting in the release of histamines). This seems to be somewhat common among the members, here.
Another trigger for some members is hormone supplements, such as HRT, or birth control options, (whether oral, or administered by transdermal patches).
I wish I had a simple explanation. Hopefully, someone else will be able to shed some light on this situation.
Thanks. I'll add your results to our 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.
Thank you both. I guess I will see about the IgA testing - does Dr. Fine do that? The histamine issue is interesting, since I quickly googled it and it seems associated with rosacea, which I have also. And fish and tomatoes occasionally make me feel sick but I haven't cut them out. More foods to cut out.... it's getting a little overwhelming and difficult to lead a semi-normal life.
Lisa,
I also had low reading per Enterolab. I had eliminated many foods like you but still felt bad. It took me a long time to figure out I had mast cell issues and needed a low histamine diet. I did Mediator Release testing as well. I am on a very restricted diet, but I feel much better than I did when I was eating reactive foods. I know it's frustrating to be giving up so many things and still feeling bad. I don't have any easy answers except keep tweaking your diet. I never took Entocort, but it may eb an option.
Mary Beth
I also had low reading per Enterolab. I had eliminated many foods like you but still felt bad. It took me a long time to figure out I had mast cell issues and needed a low histamine diet. I did Mediator Release testing as well. I am on a very restricted diet, but I feel much better than I did when I was eating reactive foods. I know it's frustrating to be giving up so many things and still feeling bad. I don't have any easy answers except keep tweaking your diet. I never took Entocort, but it may eb an option.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
That's interesting, because (as I'm sure you know) rosacea is sometimes related to gluten sensitivity, so maybe you're homing in on a set of interconnected problems that might help you figure out a larger solution.
I believe that I have some mast-cell involvement, but it seems not as consistent or severe as some other members. Mary Beth recently explained to me why the new version of the MRT test is worth waiting for, regarding finding out about possible mast cell involvement. The new test will measure a type of cells which are found in the blood, and are similar to mast cells (which are only in certain tissues). The hope is that the response of those cells to certain foods will help figure out how mast cells might also be responding to those foods.
You will hear loud cheering when those tests become available, perhaps as soon as September. Several of us are really looking forward to the additional information they might provide. In the meantime, there are some good lists of high-histamine food that Mary Beth (mbeezie is her username) has shared on this board, and you can google them as well. It's pretty confusing, because some foods are listed differently by different sources. But at least it narrows down the near-infinite world of food somewhat. Here's where I started reading - http://www.urticaria.thunderworksinc.co ... tamine.htm - and fish and tomatoes are listed, so maybe there's additional help here.
I have also used a product called Histame, which is an enzyme that processes histamines from food. It's available at iHerb.com, and you can read about it at histame.com (but the buy 1-get 1 free deal has been out of stock for ages).
Please keep us posted, and I hope you feel better AND get some answers, soon,
Sara
I believe that I have some mast-cell involvement, but it seems not as consistent or severe as some other members. Mary Beth recently explained to me why the new version of the MRT test is worth waiting for, regarding finding out about possible mast cell involvement. The new test will measure a type of cells which are found in the blood, and are similar to mast cells (which are only in certain tissues). The hope is that the response of those cells to certain foods will help figure out how mast cells might also be responding to those foods.
You will hear loud cheering when those tests become available, perhaps as soon as September. Several of us are really looking forward to the additional information they might provide. In the meantime, there are some good lists of high-histamine food that Mary Beth (mbeezie is her username) has shared on this board, and you can google them as well. It's pretty confusing, because some foods are listed differently by different sources. But at least it narrows down the near-infinite world of food somewhat. Here's where I started reading - http://www.urticaria.thunderworksinc.co ... tamine.htm - and fish and tomatoes are listed, so maybe there's additional help here.
I have also used a product called Histame, which is an enzyme that processes histamines from food. It's available at iHerb.com, and you can read about it at histame.com (but the buy 1-get 1 free deal has been out of stock for ages).
Please keep us posted, and I hope you feel better AND get some answers, soon,
Sara
I've had numerous tests. I did test for celiac and it was negative, but was quite certain I was gluten intolerant. I tested with enterolab and my value for gluten was 17, 10 for dairy and 9 for soy. I was certain I was reacting to soy so I eliminated it. Because I didn't get better with eliminating these things I did MRT. I learned I was highly reactive to lecithin, which the primary source is soy. This means soy protein is OK, but lecithin is not. I also had a high reaction to tapioca (which is in virtually all GF products), so that explained why GF didn't help. I was also highly reactive to lettuce, which I ate daily. There were many other moderately reactive foods (blueberries, almonds, etc - about 30 more foods). The pieces came together when I figured out the mast cell angle and started avoiding high histamine containing foods. My mast cell involvement is more serious than many on this forum, although there are a few of us with problems outside of our GI tract.
It takes time to wrap your mind around giving up certain foods - hang in there, you will figure it out in time.
Mary Beth
It takes time to wrap your mind around giving up certain foods - hang in there, you will figure it out in time.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
I definitely have non-GI symptoms - some seem to point to mast cells more strongly than others. I was thinking of you the other day, because my blood pressure, which had settled down, went back up. It didn't spike in that alarming way that you've seen, but it was frequently high during the day, and sometimes scary high (140+ systolic *or* around 90 diastolic, but never both at once - not that that counts).
Then I realized a source of cross-contamination I hadn't figured out before (and man, was I p.o.'d - I'm quite proud of my restraint, but that's a story for another topic).
Very interesting that you can tolerate the protein, but not the lecithin - a very good example of the sort of reaction MRT can reveal, and that Enterolab testing is designed to look for.
Hang in there, Lisa. It is a bummer, but it really does get better. Hope you soon start to see some glimmers of optimism and help,
Sara
I definitely have non-GI symptoms - some seem to point to mast cells more strongly than others. I was thinking of you the other day, because my blood pressure, which had settled down, went back up. It didn't spike in that alarming way that you've seen, but it was frequently high during the day, and sometimes scary high (140+ systolic *or* around 90 diastolic, but never both at once - not that that counts).
Then I realized a source of cross-contamination I hadn't figured out before (and man, was I p.o.'d - I'm quite proud of my restraint, but that's a story for another topic).
Very interesting that you can tolerate the protein, but not the lecithin - a very good example of the sort of reaction MRT can reveal, and that Enterolab testing is designed to look for.
Hang in there, Lisa. It is a bummer, but it really does get better. Hope you soon start to see some glimmers of optimism and help,
Sara
Sara,
In theory I can tolerate soy protein, but won't ever try it.
The last few days my BP has been really wierd, all over the place. On Saturday I got a migraine and knew it was right before my period. Prior to Saturday my BP was normal , like 103/71. On Saturday it started to go up 130s/high 80s. The headache persisted through Sunday but my diastolic started to plummet, in the 60s. I also had some lightheaded spells. Today the headache is gone and it's back in the 130s/80s, but the lightheadedness persists. I've always had lots of symptoms from my period and believe mast cells are to blame. There is a type of anaphylaxis called catamenial anaphylaxis, which occurs do to hormone changes. I'm not having anaphylaxis, but wonder if I am more susceptible. I have often wondered if I had my period when I got my flu shot . . . . can't remember.
Lisa,
I agree, it can be depressing in the stage you are experiencing now. But there is a light at the end of the tunnel and you will get your life back.
Mary Beth
In theory I can tolerate soy protein, but won't ever try it.
The last few days my BP has been really wierd, all over the place. On Saturday I got a migraine and knew it was right before my period. Prior to Saturday my BP was normal , like 103/71. On Saturday it started to go up 130s/high 80s. The headache persisted through Sunday but my diastolic started to plummet, in the 60s. I also had some lightheaded spells. Today the headache is gone and it's back in the 130s/80s, but the lightheadedness persists. I've always had lots of symptoms from my period and believe mast cells are to blame. There is a type of anaphylaxis called catamenial anaphylaxis, which occurs do to hormone changes. I'm not having anaphylaxis, but wonder if I am more susceptible. I have often wondered if I had my period when I got my flu shot . . . . can't remember.
Lisa,
I agree, it can be depressing in the stage you are experiencing now. But there is a light at the end of the tunnel and you will get your life back.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Thanks all. I just talked with my gastro, who I really love (I even had her look at this website!) - and she wants me to start Endocort to see if it helps. So I will give that a try, but also in the meantime will start to reduce my histamine intake and start a claratin every day. The only problem is if I take out all of this stuff, how will I know what is helping? I guess I just add it all back one at a time, but I think I will enjoy feeling better for a while if any of it works before I try anything!!!
I can't thank you all enough!
Lisa
I can't thank you all enough!
Lisa
Lisa,
I know *exactly* how you feel (so I quit all my supplements and even Pepto Bismol and added nothing at all for a while, because I could only understand how to subtract, not add)... I kept thinking things were causing me to react, but I think my body was just set to "auto-freakout" at that point. Some of those things were not to blame, but I'm not in a rush to add everything back. Feeling better is better than eating one more thing!
I also had a strange reaction to Claritin, and a positive experience to Zyrtec. Later, I had a weird experience with Zyrtec (but have not retried Claritin)... I am thinking it wasn't the pill, but something else going on that made me more susceptible to a reaction. I'm working hard to keep much better notes these days. (But still afraid of Claritin... thinking half a pill?)
Everyone has different responses, so Claritin may work well for you. And it might help.
I believe Mary Beth is the premier expert on the planet on food, MC and mast cells ;) You're in the right place. (Sorry you had to learn so much the hard way, Mary Beth.)
It's wonderful that you love your gastro - that is not a common experience here. If she's taking new patients, and you don't mind sharing her name/location, it could help someone who's struggling with a less enlightened practitioner.
Typically Entocort (or other medications) work with diet, but if you don't eliminate your trigger foods, symptoms will return when you taper, or when the effects finish clearing your system. It's a great opportunity to calm your system while you work on dietary changes, and you're right that longer is usually needed (and someone with better knowledge will chime in shortly, I am sure).
Sara
I know *exactly* how you feel (so I quit all my supplements and even Pepto Bismol and added nothing at all for a while, because I could only understand how to subtract, not add)... I kept thinking things were causing me to react, but I think my body was just set to "auto-freakout" at that point. Some of those things were not to blame, but I'm not in a rush to add everything back. Feeling better is better than eating one more thing!
I also had a strange reaction to Claritin, and a positive experience to Zyrtec. Later, I had a weird experience with Zyrtec (but have not retried Claritin)... I am thinking it wasn't the pill, but something else going on that made me more susceptible to a reaction. I'm working hard to keep much better notes these days. (But still afraid of Claritin... thinking half a pill?)
Everyone has different responses, so Claritin may work well for you. And it might help.
I believe Mary Beth is the premier expert on the planet on food, MC and mast cells ;) You're in the right place. (Sorry you had to learn so much the hard way, Mary Beth.)
It's wonderful that you love your gastro - that is not a common experience here. If she's taking new patients, and you don't mind sharing her name/location, it could help someone who's struggling with a less enlightened practitioner.
Typically Entocort (or other medications) work with diet, but if you don't eliminate your trigger foods, symptoms will return when you taper, or when the effects finish clearing your system. It's a great opportunity to calm your system while you work on dietary changes, and you're right that longer is usually needed (and someone with better knowledge will chime in shortly, I am sure).
Sara
-
TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
I'm going tomorrow to request entocort and I worried about the same thing. But as lots of people here have stated, I can get it online without my doctors help.quesada wrote:I do worry - she wants me only on it for 30 days and then to taper. If it works, I am going to have to convince her to let me stay on it for longer. What is a normal course? Thanks.
Arlene
Progress, not perfection.
Progress, not perfection.