Confused about Diet after I get Enterolab test results

Discussions can be posted here about stool testing for food sensitivities, as offered by Enterolab.

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grannykathy
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Confused about Diet after I get Enterolab test results

Post by grannykathy »

I've been reading through some of these posts about test results. It sounds like people are being told that even after you get you results back and they say that certain foods are ok for you, that you still need to abstain from those foods for a while. That is depressing to me. I thought when I get my results back I could immediately start eating the foods that come up ok for me. Is that not true?

I am not having diarrhea currently but instead have been constipated for 10 days. When I say constipated, I mean a very small very solid stool every other day or so but becoming uncomfortable because I'm not passing near enough. Is this considered remission? I am on day 3 of just 3 mg of Budesonide. So if this is my state at the time I get my results, will I be free to eat my "safe" foods?

Also how long is it taking people these days to get results?
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Post by tex »

Kathy,

I can understand why you are confused. For one thing, this is a very confusing disease. For another thing, you seem to have forgotten everything we cautioned you about regarding the use of budesonide.

Here are the basics:

A. The EnteroLab results refer to foods to which our immune system produces antibodies. That means that these foods will be off limits for the rest of our lives if we want to minimize the inflammation.

B. When we are having an active MC reaction (and during the initial recovery period) certain other foods (such as lactose, sugar, artificial sweeteners, fiber, etc.) in normal amounts can cause us to react and be unable to reach remission. We have to avoid or at least minimize these foods in order to stop the inflammation and allow healing. Some of us react to various other foods. After we are in stable remission for a few weeks to a few months, we can begin to reintroduce foods into our diet.

C. But budesonide complicates and confounds all that. If Budesonide or some other cortiosteroid is used, the immune system is suppressed so if we add any foods while taking budesonide that turn out to actually be unsafe, that would virtually guarantee that we will relapse when the treatment is ended. But what's worse, we probably won't have the slightest idea which food is causing the problem, so we will almost surely have to start our treatment over, at square one. Remember, EnteroLab doesn't test for antibodies to every food in the world — their tests are very specific, and to keep the cost affordable, only certain foods are tested. Therefore when we add a food, we have to be able to tell whether we are reacting to it or not. If a reaction is masked by the budesonide, then we are blind to that reaction and we will be lost, when the budesonide treatment is ended. So please be very careful about adding foods at this stage.

That's why adding any foods to your diet before you have been off budesonide for at least a few weeks can very easily sabotage your recovery. We have to be extremely conservative about adding foods until we have been off the budesonide for at least eight weeks. Believe it or not, that's the practical limit of the high-risk relapse period.

Sure, you can add foods now, and the entocort will probably allow you to tolerate them just fine, but if/when you relapse later, it's gonna be mighty tough for me to keep from saying, "I told you so." :lol:
Kathy wrote:Is this considered remission?


Definitely not. That's considered to be constipation. If you're having constipation, you need to reduce the dose of budesonide by taking it less frequently Constipation is almost as bad as diarrhea. In some situations, it's worse.
So if this is my state at the time I get my results, will I be free to eat my "safe" foods?
Maybe, but if you've still got constipation then, you've got a problem that needs to be addressed. There are certain foods that can probably be safely added to your diet, such as soy and eggs, if your test results are negative for those foods. However a negative casein test does not mean that you can automatically add dairy products into your diet, because we are all lactose intolerant when our gut is inflamed. Therefore most dairy products should be off limits until you are in stable remission and have been off budesonide for about 8 weeks. For any other foods, please ask for opinions first so that you don't jeopardize your recovery.
Kathy wrote:Also how long is it taking people these days to get results?
You'll have your results (online) a few days after the lab receives your sample.

Tex
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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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Post by grannykathy »

So that's all I was asking. If my test results say I have no negative reaction to say, eggs, soy, rice, chicken and beef. Then whether I'm still on budesonide or not, I should be able to eat those foods. right? Otherwise what would be the point of doing the test.


You said: " if we add any foods while taking budesonide that turn out to actually be unsafe," I don't know what you mean. Turn out to be unsafe even though my tests say they are safe? Or do you just mean the sugar, fructose, fiber, etc. ? If that's all you mean then I can live with that. I just want to know I can eat the foods the my test results say I have no reaction to.


As for the constipation - today was day 3 of 3 mg on Budesomide. Tomorrow I will skip it and do every other day for several days and see what happens. Or should I even day every 3rd day? At what point should I add a stool softener?


Oh and a question about dairy. I have no doubt I will come up lactose intolerant. Is there a separate test for casein? In other words, can some people not drink milk but can eat hard cheeses? Or does lactose intolerant always mean casein intolerant?
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Post by tex »

Kathy wrote:Then whether I'm still on budesonide or not, I should be able to eat those foods. right?
Yes
Kathy wrote:Otherwise what would be the point of doing the test.
The point of doing the test is to find out what you can eat when you no longer have the budesonide to cover your mistakes.
Kathy wrote:You said: " if we add any foods while taking budesonide that turn out to actually be unsafe," I don't know what you mean.
I mean exactly what I said. This has nothing to do with the EnteroLab tests. Budesonide will allow you to eat foods as long as you are taking it that would otherwise be unsafe.
Kathy wrote:Or should I even day every 3rd day?
??? If you mean jump to taking budesonide every third day, that's difficult to guess — I would take it one step at a time. IOW, try every other day first before going to every third day. If that doesn't work after a few days (a couple of cycles) then try every 3 days.
At what point should I add a stool softener?
:shrug: You shouldn't need a stool softener. Treating a side effect of a medication is what a doctor would do. The proper way to go about it is to adjust the dose of budesonide so that it doesn't cause constipation in the first place.
Kathy wrote:Is there a separate test for casein?
I'll bet you ordered a test for casein (not lactose). EnteroLab doesn't offer a lactose test that I'm aware of. If you're not casein-intolerant, you'll be able to eat hard cheeses, but please wait until the inflammation is totally gone before doing that because most cheese contains at least some lactose. You seem to be in a heck of a hurry to jeopardize your recovery. A lot of us followed a very restricted diet for a year or more before trying to add any foods. Microscopic colitis is a serious disease. It not only deserves respect, it usually demands respect.

Better yet, why not wait until you actually see your test results so that you'll be able to ask the right questions and not have to worry about "maybes" and "what ifs".

We all love you dearly, but geez — you're worrying us to distraction.

Tex
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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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Post by grannykathy »

We all love you dearly, but geez — you're worrying us to distraction.

I'm so sorry. I didn't realize. I just have no one else to talk to about this. Nobody else even knows what it is, much less understands it. I will stifle myself and stop being a pest.
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Post by tex »

Hi Kathy,

Don't take my comment too seriously. Support is what this forum is all about, so there's nothing wrong with your seeking support. I was tired and frustrated last night that not many members seem to be responding to questions and welcoming new members, etc. I suppose everyone is busy, because we all have plenty to do and not enough time in which to do it. But IMO every question deserves an answer, so if no one else responds, I feel obligated to try to respond even though I'm slow as all getout at typing these days (because of the stroke), and I was deluged with emails asking for help and various other things that had to be done yesterday.

So because of that it's often way past my bedtime when I get to bed many nights. But hey, it's a new day and I'm still kickin', so I'll be happy to try to answer your questions as best I can. I regret that I'm not as capable as I used to be so it takes me too long to do everything, but it is what it is, so I do the best I can. I'm very fortunate that despite being older than dirt, and slow and clumsy because of the stroke, I feel good, seem to be healthy, and look forward to each new day.

My bad — none of this is your fault, so you're fine. Please forgive me for making such a callous statement when I should have known better and just took a shower and gone to bed.

Tex
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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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Post by grannykathy »

tex
Thanks for that Tex but the truth is I know I have been obsessing over this. I think i am probably a control freak anyway so this malady is doing me in. I want to have it all figured out and know exactly what im doing about it - not just for today but next week and next month. This is a flaw i have and you have had to pay for it. On top of that i just cant seem to accept the fact that i am seriously ill. Thanks for your kind words but what you said before was needful. It woke me up to my obsessiveness. I really will try to cool it for your sake and mine. Prayers for you and all you deal with. Thanks for all u do.
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Post by Gabes-Apg »

Kathy,
Many here are former perfectionists, control freaks.... we get it.

That is why we say things like... stop overthinking, breath. Etc.
And I had answered the question about stool softners a couple of days ago. With a more relaxed mind you will absorb and accept the answers given to your questions.

Rather than obsessing about food, what you can't eat etc. start on embracing the mental and emotional aspects of living with MC. There are lots of good resources in the guidelines to recovery section.

Life is 10% what happens to us, 90% how we react to it.
As you start to react, whether it be frustration or the drive to 'fix' /change etc. stop, breath. Learn how to slow your mind, your reaction, breath through it.
Learn to be patient. Being calm and patient with the time it will take to sort out your MC management plan is a key part of the healing process. Being worked up, anxious for answers is not good for healing.
Gabes Ryan

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Post by Erica P-G »

Hi Kathy,

I think we are all control freaks with it comes to how we lived Pre MC.....I know I was one of them....it's still hard not to be one of them.

The mental aspect of MC has been 'really hard' when you say that it has been hard to accept the fact that this is a serious illness, I get that too...I don't want it to be that way either. I do know that this group has bent over backwards to help hundreds if not thousands of people, but ultimately it is up to us to determine if we are going to accept the results but work hard to give our bodies the time to heal like we need to in order feel a sense of beating this illness if even it means that we have a bit more noramlicy after a certain amount of time.

It takes TIME and PATIENCE to get to a better place with MC...time doesn't go fast enough and my patience wore thin often getting to a better place in this journey. It does happen so be kind to yourself, and allow the process to work for you not against you.

Ask questions as they come along.....somewhere on this forum the answer has probably been discussed (for the life of me I have the worst time using the search function on this site - I guess I expect more out of my results than I get, lol)

I don't ever want to see this forum get closed so I hope anyone that reads this post today finds it in their day to make it a priority to say something as often as they can. Tex has been a wonderful blessing to this site and it sounds like he could use more 'Moderators to step up and help out".

Hugs
Erica
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Post by grannykathy »

Thanks Gabes and Erica
You all have been such an encouragement although it may not be apparent in my posts and I do appreciate the time you give. I promise to make a supreme effort to relax and be patient.

And Gabes I do remember what you said about the stool softener - I was just wondering how bad it has to get before a person has to take some other measures when reducing the budesonide is not working. HOWEVER, since this morning I have had a little more success so maybe that is working itself out. It needs to - otherwise, I will have no specimen to send back when I get my handy-dandy testing kit. :lol:
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Post by Gabes-Apg »

Increasing magnesium intake is only other suggestion.... and patience.
Any changes we make with meds etc takes 24-48hrs to START to change. Same with magnesium. It is not instant, increasing the dose gradually every 3-4 days is safe option, as it will take 24-48hrs to see if it is enough.
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Post by Gabes-Apg »

Erica,
Re moderators, on The list of moderators only about 3 still actively visit the board on infrequent basis, 1-2 of them will reply to posts, Tex gives his heart and soul, and I give as much as I can.

We can't make people log in and participate, likewise making someone a moderator does not contract them to participating.

As someone who does try my best to help, reply, give as much time as I can, etc it gets mighty frustrating when people don't 'listen'. Ie read, accept/embrace the replies you give, and keep asking questions.

And because Tex (and partly me) are the most active we also get PM's, emails etc additional to the public posts here...

If you or anyone has any suggestions on how more people can chime in and support new people I am very open to hearing suggestions.
Gabes Ryan

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Post by Erica P-G »

Gabes and Tex

You need receptionists to help answer phones, emails, texts....the list is LONG :lol:

I will put my thinking cap on in regards to increasing help traffic for this forum....there has to be an answer out there somewhere....maybe that question needs to be tossed out here for more open communication help.

Some people are really good communicators but their realm of knowledge only goes so far when it comes to certain questions....we need more Tex's here that are well versed in many aspects of MC....

I'm only so good myself when it comes to helping to guide....I've tried to learn in leaps and bounds regarding MC, but I am not much help when it comes to other intestine or thyroid complications.

I know everyone is aware that in order for this forum to continue to be available we need to enlist in the help of the next Super Computer to all our MC issues. I would love for Tex to be with us for all eternity, but he needs a prodigy.....Gabes you are becoming that person BTW :pulsinghearts:

Know that I love you both....you've been the best Family ever.
Erica
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Post by tex »

Thanks Kathy, Gabes, and Erica,

We are (or were) indeed mostly overachievers and control freaks. That's why we're here. The chronic stress that it creates is the perfect environment for the development of MC.

If the disease has taught me nothing else, it has taught me to shift down a gear or two. I still try to control some parts of my life, but at least now I recognize that some things aren't worth the trouble it takes to try to control them. And that's OK, too.

Yes, more help would be nice because as Kathy has so eloquently pointed out, MC is a very lonely disease early on, and sometimes just having someone to talk with who has at least heard of the disease can seem priceless. It took me over 4 years to find someone who recognized the name of the disease when MC first tried to take over my life. That was when I found Sally's old board. I can still remember how happy and hopeful it made me feel to read all those welcoming posts — it was awesome.

Hugs,
Tex
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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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Post by skp »

Kathy,

I am one that has had constipation as well as diarrhea. I am now in remission but when I have had constipation, magnesium oxide has helped. Before my MC diagnosis, for a few years I had constipation issues, going only 1-2 times a week. My internist suggested mag oxide and I would take one 250 mg pill at night and it worked the next day. With MC, that seemed to help as well. Mag oxide is used in Phillips Milk of Magnesium, a laxative.

I do take magnesium glycinate, as many of us do. It doesn't have the same laxative effect that mag oxide has. I also use Mo Maggie Magnesium lotion, 250 mg per tsp. We all need magnesium as you have learned by now. And vitamin D. And yes, as Gabes said, it takes time to work.

The above posts are so correct when it comes to not over thinking this diseases and letting go. At first I thought my life was over but now I know that life is great and my diet is just a part of the day, a part of life. It doesn't rule me. There are plenty of things I can eat so I don't focus on the things I can't.

Tex and Gabes, I am reading this forum daily but haven't chimed in as frequently as I probably could. I apologize but have sometimes felt that my opinion wasn't as grounded in long time experience. Perhaps others have felt the same reticence.

Susan
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