Not sure what this is, exactly...

draperygoddess · Post by **draperygoddess** » Sat Oct 01, 2011 10:10 pm

I had a colonoscopy five weeks ago, which was negative for anything visible or microscopic. After finding this forum, I decided to try a GF/DF diet and see if it helped. Meanwhile, my GI tested for celiac, hyperthyroidism, and anemia--all negative. Was still having symptoms on and off, taking Immodium a couple days a week, so I eliminated corn and most soy. Still have symptoms. SO...any thoughts? Is it possible this is something other than a food sensitivity? PCP has been saying IBS for 5 years, but my symptoms have become more frequent over that time with no clear reason why. I'm not sure what else to try, or if I should just resign myself to a steady diet of Immodium and live with the symptoms I can't control.

Sorry if this sounds whiney! Just getting frustrated with the lack of real progress.

karenswans · Post by **karenswans** » Sun Oct 02, 2011 6:47 am

You could have the Enterolab tests to see if you are sensitive to any of the big offenders (gluten, dairy, soy, egg).

I just mentioned this in another thread, but my doctor suggested the FODMAP diet to me when I said I wanted to try diet before going on meds. He says that diet helps his IBS patients. Maybe that would help you? It initially eliminates most dairy, gluten, and foods containing certain types of sugars. For example, you can eat bananas but not apples on the diet. As you heal, you start trying to add categories of food back to see what you can truly tolerate. There is a lot of info on it out there in the wilds on the internet if you're interested in researching it. There are also several books about it.

Whatever you do, good luck!

-Karen

Post by **tex** » Sun Oct 02, 2011 8:58 am

Your gastroenterologist probably just took the biopsy samples from areas of the colon that were not inflamed. The inflammation pattern with MC is scattered patches, more abundant in the proximal colon, (the right side), and less abundant in the distal colon, (the left side). Missed diagnoses are very common if the doctor doesn't take enough biopsy samples, or if he is just doesn't know what he's doing, and he's unlucky on that particular day.

I agree with Karen's suggestion about Enterolab. If you want to determine whether or not you have food sensitivities, their tests are the only ones that are accurate and reliable.

Tex

Gloria · Post by **Gloria** » Sun Oct 02, 2011 9:44 am

Several of us have had the MRT test after we've tried going GF, DF, EF, and SF with no improvement. You can look at the MRT test results of members here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=68

However, I recommend the Enterolab testing prior to the MRT because Enterolab is more reliable IMHO.

Even a little soy can cause D. I was having problems and realized that I was getting soy from my vitamin E capsules. Soy is pervasive and every label should be checked for it. Even cans of tuna have it, as does most chocolate. For a comprehensive list of soy additives, look here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736

Gloria

draperygoddess · Post by **draperygoddess** » Sun Oct 02, 2011 8:29 pm

Tex, I had never considered the possibility that there might actually be something there and the GI just didn't catch it. Karen--I did try FODMAPS about 6 months ago without success, although it's possible I wasn't as thorough as I needed to be. I can't afford to do the Enterolab testing at present--still owe about $1200 to the hospital for my scope--but I've read that the test will show negative for some things other than gluten if you haven't been eating them for awhile. Is that right? How long can you avoid a food and still have the sensitivity show up? Gloria, if I was reacting to soy, wouldn't I have symptoms every day? I do drink V-8, which has Vitamin E in it, on a daily basis, but today, for instance, I didn't have any D despite drinking it.

What really worries me more than anything else is reading the stories of some of you on this forum who had fairly mild symptoms for years before suddenly developing really severe problems. I've always been able to control the D with Immodium in the past, but had an experience several months ago when I was out of town on a business trip and had a flare I couldn't get under control. That scared me. I want to figure out what I'm dealing with before I get to the point that it's unmanageable.

Thanks, everybody, for all your advice! I can't really discuss this stuff with anyone else! Who wants to hear about your bathroom habits??

Post by **tex** » Sun Oct 02, 2011 9:15 pm

draperygoddess wrote:How long can you avoid a food and still have the sensitivity show up?

Roughly a year for gluten, but only a month or so for most other foods. That's if you have a significant level of antibodies to begin with. If the level is only moderate to begin with, the antibodies may fade away to below the threshold for a positive result in only a few weeks.

Something like that is difficult to say, since there are a lot of complicating factors involved.

draperygoddess wrote:Gloria, if I was reacting to soy, wouldn't I have symptoms every day?

Probably, but the symptoms wouldn't necessarily always be D. Some of my symptoms, (such as the D), came and went for a year or two, before they suddenly became so bad that I couldn't ignore them any longer. I recall having other symptoms that were more persistent, though, such as joint aches and pains, headaches, a stiff neck, etc. They also waxed and waned, but they usually were more persistent than the D. This was before I changed my diet, of course, since I didn't have the foggiest idea what was wrong with me, at the time.

Tex

draperygoddess · Post by **draperygoddess** » Sun Oct 02, 2011 9:57 pm

So...if I get to do the Enterolab testing in the future, would I need to start eating dairy and soy again? For how long?

I typically get bloating and stomach pain as well as the D, but not always (I posted last week asking about how others react for this reason). I also sometimes have nausea or gas. My suspicion is that the dairy causes a more immediate reaction for me than the gluten--typically about an hour and a half, and usually bloating first. When I tested gluten after a couple of weeks GF, it didn't hit me till the next morning and was only the D. I'm not sure where soy would fit in to that. I seem to be fine with hard cheeses, but can't tolerate mozzarella or other dairy, so I think I'm lactose-intolerant, but not casein-intolerant. Oh, this is so confusing!

Is there anything in my scope or lab results that would be helpful? I only know that all the tests were negative.

thanks again!!

karenswans · Post by **karenswans** » Mon Oct 03, 2011 6:13 am

Maybe you should try the elimination diet. You stop eating everything but a few select foods for several weeks and then systematically introduce other foods to see what you react to. It's described very well elsewhere on this site. If you do a search you should be able to find it.

Post by **tex** » Mon Oct 03, 2011 9:27 am

It can take several months for gluten antibodies to build up to the point where they can be detected in the blood of a celiac, using conventional blood tests, but I have no idea how long it takes for antibodies to build up in the gut, even for gluten, let alone casein or soy, to reach the point where they will trigger a positive test result at Enterolab.

I have a hunch that it might take only a few days to a week or so, for antibodies to build up to significant levels in stool, but I could be all wet.

I thought that might be a good question to ask someone at Enterolab, so I just now called them, and sure enough, they don't have the foggiest idea either.

Karen's suggestion of trying the elimination diet would involve a lot less punishment, than a long, drawn-out challenge, and it would be a lot cheaper than the lab tests, as well. Here's a link to a guide on doing the elimination diet, in case you haven't seen it yet:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732

Tex

Gloria · Post by **Gloria** » Mon Oct 03, 2011 10:19 am

draperygoddess wrote:I do drink V-8, which has Vitamin E in it, on a daily basis, but today, for instance, I didn't have any D despite drinking it.

Vitamin E doesn't contain soy; it's usually the capsule that contains the vitamin E which has the soy. The vitamin E in V-8 should be OK.

Gloria

sarkin · Post by **sarkin** » Mon Oct 03, 2011 11:36 am

Is there anything in my scope or lab results that would be helpful? I only know that all the tests were negative.

Maybe... if you can get hold of them, and there's anything in there you can't figure out, you should feel free to post them, and someone here might be able to help interpret.

I hate it when I get the interpretation of tests, without the results themselves. As long as I'm paying for my insurance, and for whatever tests my insurance sees fit not to cover, I figure I'm entitled to as much information as the doctor, and I'm about 10 times likelier actually to *read* the results instead of scanning for outliers - which are flagged by a computer.

--Sara

Post by **tex** » Mon Oct 03, 2011 12:00 pm

It's pretty clear that doctors have a reputation for not carefully reading lab reports, because about a year and a half ago, while checking my blood levels to make sure that my red cells were recovering properly, following surgery, the lab discovered that my platelet count was headed for the moon, so they reran the test to verify the result, and added a yellow panic flag to the report. Then after they faxed the report, they called my doctor, and had him read back the results on the platelet count, to make absolutely sure that he didn't overlook it. Fortunately, checking it weekly, was all that we had to do, because it promptly turned around, and headed back down into the safe range, over the next few weeks.

Tex

P. S. Draperygoddess, your pathology report for the biopsy samples is the one that is the most important, and most likely to be misinterpreted by your GI doc, but sometimes the endoscopy report, (the colonoscopy exam), contains some interesting observations, as well. It appears that doctors usually don't tell their patients about everything that they find, but the information will be in those reports.

draperygoddess · Post by **draperygoddess** » Mon Oct 03, 2011 2:39 pm

Thanks everyone for the great suggestions! I have put a call in to the GI's office to request a copy of the reports for both my scope and the blood tests. Have felt pretty good today, so I'll see what the rest of the week holds before I do anything else diet-wise. And Gloria, thanks for the note about Vitamin E--some of the "foods to avoid" lists I have read list Vitamin E capsules as containing soy, but I wasn't sure if that was just for the capsules or if it was added for some other reason.

-Cynthia