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To test or not to test?

 
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Sue777
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PostPosted: Fri May 12, 2017 6:28 pm    Post subject: To test or not to test? Reply with quote

Hi Guys.
I'm finally ready to spend the money and get the Enterolab test kit, but in reading through some of the posts on this forum I'm confused as to whether or not I should now. I was on one Budesonide (3 mg) for several months as maintenance and then went totally off for 2.5 months. Started flaring again so now I'm taking 2 a day since 5 days ago. Would it be a waste of money to order the test kit now that I've restarted the Budesonide? Two posts that confuse me are below:

"I'm sorry that you're having to deal with a relapse of symptoms. But the good news is that unless you have selective IgA deficiency, the EnteroLab tests will work just fine for you. You would have to take budesonide for at least 3 or 4 months for it to have a significant effect on your antibody production, and in most cases the tests will still work reliably unless budesonide has been used for more than 6 or 8 months. A few weeks or so will have no significant effect on the accuracy of the tests."

But then . . .

"The simple answer is "yes". The more complex answer is "probably, but not necessarily". This is because treatment with budesonide in most forms will eventually suppress the immune system enough that antibody levels will begin to diminish. As a result, unless the patient has extremely high antibody levels to begin with (which can be the case if reactions have been going on for many years), after a few months of using Entocort, for example, virtually all antibody tests (including the stool tests at EnteroLab) will begin to yield false negative results because the antibody levels will have fallen to below the threshold at which a positive test result will be triggered."


Your thoughts, please?
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Gabes-Apg
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Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Fri May 12, 2017 9:21 pm    Post subject: Reply with quote

sorry you are having a flare.

in line with the second paragraph - how long did you have symptoms before diagnosis and starting budesonide the first time?

if your period of symptoms was short ie under 6 months then I would say that you might be borderline for getting optimal results from the tests.
if the period of symptoms was longer then I think you will get benefit.

if you are worried about doing the outlay, the other option is to do elimination diet process.. go back to bland ingredients and trial items.

regardless of what you decide - what is your current eating and drinking plan like?
are you taking Vit D3 and magnesium?

hope this helps.
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri May 12, 2017 9:33 pm    Post subject: Reply with quote

Hi Sue,

3 months at 3 mg per day is not likely to have any significant effect on your antibody levels. Nor is 9 mg per day for at least a couple of months, maybe 3 or 4, likely to have a significant effect. But 6 months at 9 mg per day would likely begin to affect the antibody levels. And 9 mg per day for 10 or 12 months would have a distinct negative effect on all but the anti-gliadin antibodies. The anti-gladin antibodies would be down, but would still provide useful test results.

So if you order the test promptly, you'll be OK. In a few months the tests may not work as well for most of the foods other than gluten. They might, but they also might not. The reason we can't be sure is because budesonide is more effective for some people than it is for others. Gabes is correct that the longer you have reacted the higher your antibody level will be, but I think that in your current situation, the tests will work just fine for anyone unless they have selective IgA deficiency.

Tex
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Sue777
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PostPosted: Sat May 13, 2017 11:17 am    Post subject: Reply with quote

Hi Guys. Thanks for the prompt and helpful replies - I can always count on you to be here!

It's hard to answer Gabe's question because I've been dealing with "spastic colon" and IBS-D for about 45 years. I was officially diagnosed with CC 12 years ago, and have probably been on the Budesonide rollercoaster for about 4 years. Typical scenario is 9 mg for a few months, 6 mgs for a few weeks, 3 mgs for a few weeks, down to zero, then remission for about 4 months. Back up to 9, down to 6, down to 3, down to zero, remission, flare, restart.

This past round I kept myself on 3 mg for 4 months figuring I'd rather stay on a low maintenance dose rather than continue to play the 9/6/3/0 game but when I went for my GI check up he urged me to get off for a while. I expressed my feeling that I was probably better off staying at 3 mg rather than doing the 9/6/3/0 cycle continually but he disagreed and said he really prefers my body gets a break from it altogether once in a while, so I went down to zero mid-February. About a month before that my GP had urged me to embrace a plant-based diet (i.e. Vegan) and when I mentioned that to my GI, he loved it and supported it. They both strongly feel that animal proteins cause inflammation and that I would probably feel better in all aspects strictly eating plant-based.

They were right in many regards - so many of my health issues cleared up and I loved the way I felt, but I may have overdone it with the raw veggie/fruit smoothies because after 2.5 months of remission from the CC I started to flare. Would I have flared even if I weren't eating Vegan? Who knows. Since I started flaring I gave up the plant-based (and smoothies) and am eating bland.

I really, REALLY want to go back to eating plant-based - as I said, so many other health issues improved, but it doesn't seem conducive with CC so it's time for an Enterolab investment. But as you can imagine, I'm afraid to throw away the money and finally pull the trigger on that test if I'm not going to get the full benefit of it.

I guess I'll order it now and then decide if I should send a sample soon or wait until I've weaned off the Budesonide again. There's nothing in the test kit that "expires" or won't be as effective if it sits on my shelf for a few weeks, right?
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat May 13, 2017 11:57 am    Post subject: Reply with quote

Right, it doesn't age. I don't know if they have an expiration date on the offer, but I doubt that they do. The kit is just for collecting a sample. Are you aware that EnteroLab also offers vegan versions of the two most popular test panels? They're the A2 and C2 Panels.

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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Sue777
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PostPosted: Sat May 13, 2017 12:24 pm    Post subject: Reply with quote

Thanks, Tex.
Yes, I did see that they offer vegan versions, but that option only added to my confusion. Since I've only been vegan for a few months (and am not at the moment since my recent flare) I'm not sure what I should order. I'm thinking I should go for the non-vegan options so that I can see if I am affected by animal proteins or not. Make sense?

I also just dropped a note to my GI doc (online portal) asking if he thought there were any chance that he could order the test or perhaps "prescribe me" to order it so that insurance might cover some of the cost. Anyone had any luck with that?
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Gabes-Apg
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Location: Hunter Valley NSW Australia

PostPosted: Sat May 13, 2017 2:31 pm    Post subject: Reply with quote

based on what you have shared above, if I was going to test, I would want to test based on what my long term eating plan basis would be...

the only way to know if vegan suits you better, or if animal protein suits you better (from a MC point of view) is to do both tests.

Vegan may well work ok for you, so long as you keep the fibre levels at moderate "MC" tolerable level, AND you be careful about how many different ingredients you have per meal, per smoothie.

ultimately the decision is yours, we can not make it for you. as someone with multiple health issues, it can be complicated at times making decisions about treatment/eating plan approaches that will help other health issues, but not impact the MC. this can be stressful at times when doctors/GI/practitioners do not understand how MC reactions happen and how long it takes to settle them down.

you didn't answer my question about whether you are taking Vit D3 and magnesium? regardless of what eating plan you stay with etc these items are super essential to managing inflammation in the body (and helping with the other health issues) and also improving the effectiveness of medications etc
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Gabes Ryan

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Sue777
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PostPosted: Sat May 13, 2017 3:16 pm    Post subject: Reply with quote

Sorry, yes, I take 5,000 IU's of D3 per day but no magnesium supplement. My doc ordered what seems like every blood test under the sun a few weeks ago (6 vials) including food intolerances and everything looks good, at least in the blood work.

To order both versions of Enterolab tests I'm probably looking at $1000 or more.... not sure I'm ready to do that.
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Gabes-Apg
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Location: Hunter Valley NSW Australia

PostPosted: Sat May 13, 2017 4:34 pm    Post subject: Reply with quote

I would give serious consideration to taking magnesium, there are lots of good posts with info and the 'why' of why magnesium is important in the main message board.

one key one for your situation is that magnesium is needed for the body to use the Vit D3 properly, especially when there is inflammation
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Gabes Ryan

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tex
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2017 Nov 22 - 4:49 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat May 13, 2017 8:11 pm    Post subject: Reply with quote

The only hitch to the vegan diet is protein. If you test positive to soy, you will likely be sensitive to all legumes also, leaving you with no practical vegan source of protein.

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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Gabes-Apg
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PostPosted: Sat May 13, 2017 8:48 pm    Post subject: Reply with quote

I am wondering if part of the reason your other health issues improved with the green/vegan eating plan, is because it was higher in magnesium?

Agree with Tex, if you are reacting to Soy, then finding good protein sources will be a challenge
MC with vegan eating plan, you will need to monitor B12, iron levels etc on a regular basis.
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Gabes Ryan

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Sue777
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PostPosted: Sat May 13, 2017 9:37 pm    Post subject: Reply with quote

Agreed: if I test positive for soy, I will no longer be able to be vegan / plant-based. Since I'm at my wits end trying to figure out the best eating plan for my particular ailments and chemistry I'm going to let the test results dictate what I do next. And yes, since going vegan I do take a B12 supplement and my doc is doing a lot of bloodwork (before and during) to see how things are going and where I'm lacking, if anywhere.
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Erica P-G
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PostPosted: Mon May 15, 2017 4:48 pm    Post subject: Reply with quote

Hi Sue,

I've been following along here and I'm going to bet because you are not getting adequate amounts of Magnesium to off set the VitD you are taking, your VitD is not doing what it's supposed to as it doesn't have enough Mag to operate on.

Also I wish you well in your tests.....I enjoy what meats I'm able to eat, I don't have to eat much of them to feel the benefits after a couple years of healing. I can remember eating so much meat LOL I had to take an L-Ornithine to help remove built up ammonia in my cells due to so much Amino Acids.

I digress...I'm still fairly Vegan and I use Soy free Earthbalance spread, and Veganaise soy free or Just Mayo (it has olive oil) as my substitute to mayonnaise now. For some reason I'm not that fond of being called Vegan, as I'm not doing it to protect animals that's for sure.

I hope you find your balance soon, and pin point what foods are your friend these days Wink
Erica
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Sue777
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PostPosted: Mon May 15, 2017 6:18 pm    Post subject: Reply with quote

Hi Erica - thanks for the message.

My last blood test showed that my Vitamin D levels were in a good place, and in charting the levels over the past 5 years there's a definite pattern: when my doc tells me my levels are good I get lazy and stop taking the supplements religiously and at the next test, the levels look like they took a nose dive. I get the lecture about being scrupulous with my daily Vitamin D supplement and I bring them right back up again. But I wonder if you're saying that the test results aren't accurate and that I may not be utilizing the Vitamin D that I have in my system?

I don't usually refer to myself as a vegan, either, because they sometimes seem fanatical and I'm far from that - I'm more of a plant-based eater who isn't a die-hard about it. My doctor just strongly suggested that I give up animal protein as much as possible, and that's what I do.

I see my internal doctor tomorrow morning just for a check-in - I'm going to ask her if Enterolab testing is something she can "prescribe" so maybe insurance will pay some of it. If not, I'm going to order it anyway but figured it was worth waiting till after I see her.

Thanks again for weighing in.
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Gabes-Apg
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PostPosted: Mon May 15, 2017 6:26 pm    Post subject: Reply with quote

Sue
this post has the link to the article of why magnesium is important for use of Vit D
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=19888

it was this post and article that started me on my Magnesium journey coming up to 3 years ago...

from the article...

Quote:
However, itís not well known that magnesium is necessary to convert vitamin D into its active form so that it can turn on calcium absorption.[1]

This is also a key thing for MC'ers we need the Vit D in optimal form to help manage inflammation in the body.
Magnesium is also key for the Vit D receptor within the cell to get the right message to use the Vit D3 where we need it

also from the article
Quote:
It turns out that all the enzymes metabolizing vitamin D require magnesium as a necessary co-factor.[2],[3] When you take high doses of Vitamin D and if you are already low in magnesium, the increased amount of metabolic work drains magnesium from its muscle storage sites. Thatís probably why muscles are the first to suffer magnesium deficiency symptoms ó twitching, leg cramps, restless legs and charlie horses. Angina and even heart attacks affecting the heart muscle are all magnesium deficiency symptoms.

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