This disease is so depressing even without flaring

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Zizzle
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Post by Zizzle »

Monique,
I'm less sold on MRT than I am on Enterolab, but I only had the basic Enterolab panel back in the day - gluten, dairy, soy eggs and yeast. I didn't test reactive to wheat or soy on MRT, so I wouldn't have known to cut them out (of course I was already off them for a long time). I think MRT captures sensitivities at one point in time -- basically it'll catch foods you eat a lot of. I suppose I would be more sold on it if I had gotten at least one RED sensitivity, instead of 26 yellows.

Incidentally, regarding your green beans, please note that green beans are frequently cited as a sensitivity for Crohn's patients. Maybe just because they are a legume, but who knows. I used to love them but stopped buying them when my daughter became allergic to all legumes. It makes it much easier to be almost legume-free!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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tex
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Post by tex »

Monique,

:iagree: with what Zizzle said. If you have a copy of my book handy, my comments about MRT are on pages 149–150. The MRT results can be helpful for many people, but they are not exactly chiseled in stone, and they are definitely not in the same class as the EnteroLab test results, as far as reliability and repeatability are concerned. And they are notorious for missing the most important allergens, such as gluten and casein. :shock:

Love,
Tex
:cowboy:

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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carolm
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Post by carolm »

Monique, I'm not necessarily advocating this group over another but this is where I ordered my MRT testing. It's $399. I skipped the dietician portion because the closest one was 3 hours away and after I interviewed her by phone she had no experience with LC. I decided that our MC group here was where I was going to get my REAL diet advice and that proved to be true. In my opinion the rotation diet they would prescribe was not going to be specific to my LC. It's not their fault, it's just that MC is just so person specific. I got great advice from Polly, Tex, Joe, Mary Beth, Zizzle, Gabes and Gloria as I tweaked my diet.

I agree that it's not as valid as Enterolab but I was to the point of trying to sort out if I was having histamine and mast cell reactions. Like Zizzle said I already knew to eliminate soy, wheat, dairy and eggs. So the pecking order should be Enterolab first then MRT. They don't measure the same thing.

I ordered the kit and paid $15 at my local Affordalab (where you can order your own tests) for them to draw my blood. They drew the blood and they even Fed Ex'd it back to the lab for me.

http://www.truehealthlabs.com/search.ph ... rt&x=0&y=0

Maybe this is a more economical option -- relatively speaking.

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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wmonique2
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this disease is so depressing...

Post by wmonique2 »

Z.---thanks for chiming in and for the info you provided. It certainly made me think about dropping 900 bucks on the test ESPECIALLY if I am going to get 26 yellows. That would seriously tick me off.

Tex---Thank you for reminding me that all the answers are in your book, which I have right in front of me all the time and for helping me make an intelligent decision about this. I went back on elavil yesterday and I can't believe how much better I was today. I even had plenty of energy and no sickness and no nausea.

Carol---THANK YOU so much for that great link. I may hold off now that I am better with elavil. I should have gone back to it a lot earlier. That price won't break me. Oxford Labs (the LEAP people and those that give the test have it a lot more expensive on their website). I was so stressed out I was willing to pay anything just to have some answers. Elavil was the answer, however. Allegra worked for a while but apparently stopped working. I had eliminated gluten, soy, casein, caffeine, nuts, dairy and most fruits and vegies more than a year and half ago and eliminated what enterolab showed as reactive. Just couldn't think of what else to eliminate. Apparently, like you I have a serious mast cell issue.

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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carolm
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Post by carolm »

Monique,
I think my nausea was from a couple of things-- inflammation and erosion in my stomach (shown on my endoscope), plus when my lower gut motility is overactive I get nauseated. For me the Elavil (amitriptyline) slows the motility and the nausea doesn't get started. If I need anything now it's an over the counter Bonine tablet (meclizine). And that's very rare after I started acupuncture. It didn't seem to matter what changes I made, I still had motility problems and too many days of the 'dumping syndrome' accompanied with nausea and fatigue. Elavil has made all the difference in regards to lower gut motility.
Count me among the Elavil sisterhood.
I did the MRT testing because I was having cramping, still feeling weak at times, and just not progressing like I thought I should.This was prior to starting Amitriptyline. Polly had shared with me that she felt she didn't really turn the corner until she had her MRT results. As much as I was interested in food results, I was even more interested in the 30 food preservatives, additives, and chemicals that they tested. I could test foods but how would I ever know if I reacted to those chemicals and additives in food? So it was time. I felt like that was the point that I began to fine tune things. I had already made the changes with the big 4.

I'm glad you are feeling better. I'm thinking if I have to stay on 10 mg of Amitriptyline forever then so be it. I'm willing to titrate my PPI (Dexilant) now that I'm fairly healed but I'm not willing to give up the Amitryiptyline. It makes my life more predictable.

Again, it does me good to hear that you are better.
take care,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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wmonique2
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Post by wmonique2 »

Carol,

You know since I had eliminated all of the offensive foods, I am also intrigued by the chemicals and additives too. And even the spices. I use turmeric a lot in rice (it's an anti-inflammatory but who knows how my gut reacts to it?).

Polly also mentioned to somebody (recently) that MRT helped her turn the corner and that's why I thought that I should do it, regardless.

I am going to give myself an emotional break, start eating and then tackle it at some point.

Welcome to the Elavil sisterhood :lol: I'll never try going without it again! Not for a good while, at least. Trying allegra was a good idea but the effect lasted only a while.

Thanks, Carol for all your good wishes.

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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wmonique2
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Post by wmonique2 »

Carol,

I forgot to ask---were you reactive to any of the dyes, additives, chemicals? And were you happy with the rest of the results?

Z. says she got 26 yellows...it's like saying Go ahead take a chance...

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Zizzle
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Post by Zizzle »

I was reactive to sodium benzoate, yellow #5, blue #40 and a couple other chemicals.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
tlras
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Post by tlras »

@Monique.....even though I know how well Elavil works I'm still shocked that it worked for you so guickly. Amazing! If you gain some weight, send some over to me. I seem to be stuck at 120, want to gain 10 more. I will never give up my rice and corn products....would blow away in any wind storm...lol! Luckily I do well with them. I hear ya....suicidal/homicidal comes to mind.

So I wonder how many here in the forum are members of the Elavil club? Will never get off that stuff. I've never had issues with it so why even think about getting off it.

@Carol...so glad it's working so well for you too!

As for the MRT, I would be interested in knowing what chemicals/preservatives I may react to. But if I find out I react to BHT I will lose it as that's what's in my chex cereal. I shouldn't be eating that stuff anyway I suppose as I know BHT is not good for anyone. Arrghh!!

My depression is somewhat lifting....but ever so slowly. I need to go to a beach but not ugly Galveston...lol! A trip to Maui would be nice.

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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wmonique2
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this disease is so depressing...

Post by wmonique2 »

Hi Terri,

Yes, elavil has been miraculous indeed. I am another person in 2 days. Yesterday I had so much energy I couldn't believe that I spent the whole day out running from place to place. And I ate normal (meaning 3 meals instead of 1 of mushy stuff)

I don't have any excess weight right now to send over your way. I am thin (110--size 2) LOL. I had picked up 5 with elavil previously and that's when I stopped taking it but I lost them this last month when I was sick. If any of my friends read this thread they wouldn't believe that there are women out there who want to GAIN weight.

MRT tests for like 30 chemicals and additives. I won't do it now since I am OK. I had a very rough 5 weeks and I need a normal break without worrying about chemicals or additives. Later.

Carol gave us a very good link and price. I haven't seen that price anywhere and the way she did it is definitely the most economical way. Keep that info so we can use it when we think it's time to get fleeced by big pharma :-)

I wish Atlanta had a beach. It is definitely the only thing missing in here. If there was one, I'd tell you to come over and I can damn guarantee you that you won't be depressed around me! I am like a tonic! (Effervescent, that is!).

Read some funny books, watch funny TV (David Sedaris, Seinfeld) and go out. That's what I usually do...And keep posting, this place has replaced shrinks for most of us!

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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wmonique2
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Post by wmonique2 »

Terri--------I wanted to add that Elavil at 10 mg doesn't do anything for depression. If one is depressed, they need a seriously bigger dose (I believe at least 50 mg). At 10 mg all it does is quiet the gut. That's why it worked so quickly for me. I needed it to quiet the gut. That's why they prescribe it to people with IBS too.

I don't get depressed when I am healthy. I get depressed when I am sick and because I am sick.

I know it's tough for you right now, but you've been through this before and you survived it. You'll survive this phase too. Just keep telling yourself that it is temporary and it's not going to last forever.

Stay strong, girlfriend. You're not alone.

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
tlras
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Post by tlras »

Monique,

You are right....just 10 mg of Elavil does nothing for depression. I take 25 and it does nothing for that. I've only had mild depression once before and that was when I was getting chronic headaches 20 years ago. My issue has always been anxiety....like now. That's why I take the Librium. Doctor had put me on Paxil years ago and it worked very well but when I took it 7 years ago, it gave me D for a month. Got off and was fine.

Someone commented on this post about Prozac. I got the hives from that drug! Not easy to wean off of....good luck and take it slowly...it may not be what has caused your MC. Hoping you can get your MC controlled without totally getting off the Prozac.

Yes, Monigue, too bad we don't live closer to each other. You already make me laugh silly! We'd go out belly dancing together! As for the books I've been reading lately....smut books....some are funny, some are too intense. Just wanted to get away from my supernatural books for awhile (my fave).

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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Post by brandy »

Hi Terri,

I also like the cookbook that Carol recommended! Paleo Comfort Foods, the turkey gravy on page 110 is delish, I've made it 6 times with the rosemary option. It's interesting that Carol and I tried different gravy recipes. I've made the shrimp bisque on page 154 twice. You would never know the shrimp bisque did not have cows milk creme in it.

Brandy
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Post by carolm »

Monique,
here's my list of chemicals:
Yellows- Blue #2, ibuprophen, sorbic acid, capsaicin.

High greens- Potassium nitrate, sodium sulfite, red #3, solanine, sodium metabisulfite, aspartame, yellow #6, red #40, and acetaminophen and fructose.

So that's my list.
I think it would be hard to test these so I just avoid them.

@Brandy-- I am addicted to rosemary and sage together. In a good way. It makes foods much more interesting. I'm glad you like that cookbook too. It's easy to over eat that sausage gravy recipe, right?

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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wmonique2
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Post by wmonique2 »

Carol,

thanks for that. I guess you spend a lot more than time shopping these days trying to avoid all those colorings and additives...


Is this book you mentioned GF? SF? DF? I would have to do modified since paleo isn't exactly for me since I have very few fruits and vegies because of the fiber. I eat mostly yams and squashes like butternut. I also eat plenty of rice and red potatoes. I think none of this stuff is allowed in the true paleo.

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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