a little setback....

[Leah]

Great to hear that you are feeling so much better Anne. We all have set backs though. That's how we learn what we shouldn't eat! I don't want to rain on your parade when you are doing so well, but you might want to talk to your doctor about trying to slowly lower your dose of Budesonide.. Six months is a good long time for some healing to have taken place. Just know that when you do, things might get "a little soft" and you might notice other foods that bother you. It's a process :)

Leah

[tlras]

@Anne...I had to get off Asacol too as it made me worse. Glad you are having improvement! From what Tex has told me those nasty gluten antibodies take a long while to not show up in a stool test. Here I am 6 months GF and still have gliadin antibodies in my blood. Once those IgA levels go down, I hear they are still present in the stool and will take even longer for those to go away. Arrgghhh!! We must be patient.

So, Tex, if some of us are still showing gliadin IgA antibodies in the stool, we could be just reacting to those and not another food? Do IgA antibodies for dairy and other foods stay in our system a long time as well. I thought I read where those only last a week or so?

Anne....was the dream topping filled with sugar or artificial sweeteners? If so, you may be reacting to that even though anything processed in a facility with wheat products is a gamble. I try to avoid those but I know it's hard.

Terri

[wmonique2]

Terri,

Regarding your note to Anne--I went GF a year ago and when I tested with enterolab a month ago, there were apparently antibodies in there otherwise I wouldn't have tested positive. Right?

How did you get off asacol like one pill at the time? I am on 3 a day and I had been on 2 a day before but when I got my recent flare up I had to go back to 3. I am thinking about reducing to 2 now and see if I can handle it...

Tex----if the phloretin theory holds, I should be off mesalamine real soon I've been juicing apples everyday for over 2 months although I realize that I am not a rat, just slightly bigger and smarter perhaps

Monique

[tlras]

Monique,

I'm probably not the best person to ask about weaning off Asacol unfortunately. I started out with one 400 mg pill twice a day for a week then went up to 400mg/3times a day the following week. At that time I had seen my PC doctor and she told me that was like taking nothing and I need to take the full dose. (I was being stubborn with them.) Within the next week I was taking the full dose (2 400 mg/pills 3 times a day....couldn't swallow the huge 800mg ones.) By that week by D got worse and worse so I called the doctor to basically find out when that stuff was to start actually working. To my surprise he told me to immediately get off of it and get on Pepto. I wish you luck in your attempts to get off them. Hopefully now that you are taking the anti-histamine, you won't get the nausea.

Wow....Gluten antibodies still in the stool after a year being GF! That's discouraging especially if those antibodies are still causing us issues. I wonder sometimes if we are getting some cross contamination somewhere and that's why those suckers are hanging around. Who knows! If that's the case then I may always be popping meds on and off for some time as that's the only way to get rid of the symptoms of Gluten.

Terri

[tex]

So, Tex, if some of us are still showing gliadin IgA antibodies in the stool, we could be just reacting to those and not another food? Do IgA antibodies for dairy and other foods stay in our system a long time as well. I thought I read where those only last a week or so?

The antibodies are just scouts for the immune system, each out searching for a specific food sensitivity. As long as an antibody doesn't locate an example of the specific food antigen that it was designed to search for, nothing will happen, and at the end of its life cycle, it will harmlessly expire. If it should encounter a problem, however, (the specific type of food antigen that it was programmed to attach to), then it will attach and complete the triggering cycle, resulting in the generation of a small amount of inflammation. The total amount of inflammation generated will be the sum total of the effects of all the antibodies in circulation that successfully attach to a food antigen to which we are sensitive. The ones that never attach, never generate any inflammation, and expire harmlessly.

Here's why the number in circulation matters: if the numbers have decayed to the point where only a few antibodies remain in circulation, then even a large "dose" of food antigens cannot trigger a large reaction, because relatively-speaking, only a few antibodies are available to attach to them and complete the reaction cycle. If the problem food remains in the diet, though, the number of antibodies in circulation will continue to build, and as the numbers build up, (or if a large number of antibodies still remain in circulation because of an earlier reaction response), then the reaction can be severe, because many, many antibodies will be available to attach to antigens, and altogether they will be able to generate a major amount of inflammation.

After a reaction to a food, the body continues to produce antibodies for a relatively long period of time (to search for food antigens), to make sure that the problem doesn't reoccur. If no further problem is found, the antibody production will slowly diminish until it decays to a very low level. Most antibodies other than anti-gliadin antibodies have a half-life of only 5 to 6 days, while anti-gliadin antibodies have a half-life of 4 months . Since the number of antibodies in circulation influences future antibody production rates, (high levels correlate with more slowly decreasing production levels), and reaction severity, obviously antibodies with a relatively long half-life can eventually build up to a very high level, and take a long time to decay, compared with antibodies that have a relatively short half-life.

Does this make sense?

Tex

[tex]

Tex----if the phloretin theory holds, I should be off mesalamine real soon I've been juicing apples everyday for over 2 months although I realize that I am not a rat, just slightly bigger and smarter perhaps

Here's hoping that it works.

Tex

[fatbuster205]

Great to hear that you are feeling so much better Anne. We all have set backs though. That's how we learn what we shouldn't eat! I don't want to rain on your parade when you are doing so well, but you might want to talk to your doctor about trying to slowly lower your dose of Budesonide.. Six months is a good long time for some healing to have taken place. Just know that when you do, things might get "a little soft" and you might notice other foods that bother you. It's a process :)

Leah

I hear you Leah! I am just astonished at how quickly I have shown improvement! But the Dream Topping I suspect was full of artificial sugars - I guess I am really going to have to avoid anything from a packet for some considerable time - it didn't cause D - just 7 BMs and a lot of bloating and discomfort/pain! Only 3 today and all Norman's so I think the budesonide is finally being able to demonstrate that it is working now that the Asacol antagonist, in my case, has been removed plus obviously the diet! I see my GP on Monday and am going to discuss maybe reducing my dosage - my consultant seems to be of the view that long term use is needed. The registrar when I had the endoscopy described my MC as unresponsive to treatment! At least I now know the way forward and obviously, from reading on here, I am well forewarned that it may not all be plain sailing!
Anne

[Leah]

Tex, great explanation of how antibodies "scout" and how the numbers of them matter. Thank you.

Leah

[fatbuster205]

@Anne...I had to get off Asacol too as it made me worse. Glad you are having improvement! From what Tex has told me those nasty gluten antibodies take a long while to not show up in a stool test. Here I am 6 months GF and still have gliadin antibodies in my blood. Once those IgA levels go down, I hear they are still present in the stool and will take even longer for those to go away. Arrgghhh!! We must be patient.

Anne....was the dream topping filled with sugar or artificial sweeteners? If so, you may be reacting to that even though anything processed in a facility with wheat products is a gamble. I try to avoid those but I know it's hard.

Terri

Hi Terri,
The antibodies scenario is a little scary! To think they like to hang around! But hopefully things will continue to improve! Yeah and I suspect artificial sweeteners as well! I guess I have learnt a lesson! I suspect that this will be a long journey but if it keeps me well, then I will avoid packets like the plague!
Anne[/quote]

[fatbuster205]

How did you get off asacol like one pill at the time? I am on 3 a day and I had been on 2 a day before but when I got my recent flare up I had to go back to 3. I am thinking about reducing to 2 now and see if I can handle it...

Monique

Hi Monique,
FWIW, I went from 6 x 800mg /day to nothing overnight - but that is because my consultant (rightly) suspected I was adversely reacting to them! As they have worked well for you, and if they keep your symptoms at bay, perhaps you should stay on them longer? My previous consultant had told me I would be on Asacol for life! If it had worked for me that would have been OK I suppose but I prefer the idea of fixing this through diet!
Anne

[tex]

Tex, great explanation of how antibodies "scout" and how the numbers of them matter. Thank you.

You're most welcome,
Tex

[tlras]

Yes, Tex, thanks so much! I think you were a doctor in your past life...lol! It's starting to make some sense but I will need to read it about 20 more times..haha! Just taking a day off from research....less stress the better for me right now. I tend to dwell on this too much and I'm taking a little break. I'm trying to understand too much at once and it's driving me nuts right now. Got brain fog going on or something.

@Anne....so true! What about this disease isn't scary anyway! I'm having a good day today....day 2 of no Pepto....but after reading a few posts in the last 2 days in regards to people taking Pepto and symptoms coming back a few weeks later has me a little bummed. I do realize we are all different but if it happens it happens and I've got Imodium to take over the holidays if need be. Yeah...those artificial sweeteners can cause some issues alright. Surprised the Saccharin in my 7 tablets of Pepto every day didn't give issues unless that is why I had the occasional bloating.

Thanks again Tex! I don't know about you, but it's too darn cold in Texas! Not happy!

Terri

[Fish2575]

Tex, This is long and winded!

I have a question about the antibodies. Why does Enterolab only consider a food to be an intolerance if it produces a certain number of antibodies? I read what you wrote, and I guess it just seems that someone should not (in a perfect healthy person) produce any antibodies to foods. If they do produce a small amount of antibodies, why are they not considered intolerant. Couldn't it be that a person hasn't had that food in a while and their antibody number has decreased? I was bothered by the results I got from Enterolab, because they do not give a number of antibodies per food on the 11 antigenic foods test. I personally found it to be less exact than I like. They give an overall score and rate them as likely, somewhat likely, or not likely to cause a reaction. My overall score was 1 point above the normal range, yet I was considered very intolerant to corn, tuna, chicken, and almonds, and mildly to cashew, pork, oats, and walnuts. I showed no reactivity to rice, beef, or potatoes, but I never ate potatoes so I would expect the level to be low.
Also, I ate the very intolerant foods all the time which would explain higher antibody levels for those foods. Anyway, my main question is, why would a person have antibodies to a food and not be considered intolerant? Why should a certain level of antibodies be used to determine intolerance?

Thank you! Susie

[tex]

Thanks again Tex! I don't know about you, but it's too darn cold in Texas! Not happy!

I agree. It was 21 degrees here, last night, and it will probably be close to that again tonight. That's too cold for this far south, this early in the winter

Tex

[tex]

If they do produce a small amount of antibodies, why are they not considered intolerant.

Anyway, my main question is, why would a person have antibodies to a food and not be considered intolerant? Why should a certain level of antibodies be used to determine intolerance?

This phenomenon occurs because of the nature of the statistical scattering of results associated with ELISA testing. Any test of this type produces sort of the chemical equivalent of background noise, which has to be compensated for by using statistical analysis methods to determine a cutoff point for positive test results. There will always be a very small percentage of false negative results and false positive results. Statistical analysis is used to determine the cutoff point, in order to minimize the number of false results.

Couldn't it be that a person hasn't had that food in a while and their antibody number has decreased?

Yes, that's very possible, but if the cutoff point is properly determined, an individual who receives a negative test result should not be currently reacting, and actively generating antibodies. That means that their antibody level should eventually decay to a point where it will not yield a positive test result.

I was bothered by the results I got from Enterolab, because they do not give a number of antibodies per food on the 11 antigenic foods test. I personally found it to be less exact than I like. They give an overall score and rate them as likely, somewhat likely, or not likely to cause a reaction. My overall score was 1 point above the normal range, yet I was considered very intolerant to corn, tuna, chicken, and almonds, and mildly to cashew, pork, oats, and walnuts. I showed no reactivity to rice, beef, or potatoes, but I never ate potatoes so I would expect the level to be low.

That's because the test is done on a relative basis, rather than an absolute basis, in order to cut the cost of the test down to where more people can afford it. Individual tests for all those foods would triple or quadruple the cost of the test, and as a result, very few people would order it. When reading those results, you have to bear in mind that they are all relative. That means that if the overall score was barely in the positive range, then foods shown as "most reactive" are not nearly as reactive as they would be if the overall score had been 10 or 20 points above the cutoff point.

The interpretation didn't actually say that you were "very reactive" to any of those foods, did it? The report should have tabulated the foods that showed the "most immunologic reactivity", "intermediate immunologic reactivity", and "least immunologic reactivity". It's still useful information, because if cutting the main offenders (gluten, dairy, soy, eggs, etc,) out of the diet is not sufficient, then you know where to look for the next candidate to try avoiding. But it's all relative to the overall test score. It's more like the MRT results, because they aren't necessarily chiseled in stone — they may have to be verified by trial and error.

Tex