Holistic treatment option?

[wmonique2]

I met a clinical nutritionist (holistic one) at a social setting and we, of course, started talking about my LC and I mentioned this forum and how some people are in remission. She, of course, disagrees with anything the docs are saying and how they are treating this condition.

Her contention is that colitis can be cured, not just remission, completely gone she said. My ears perked up. Her opinion is that one must find the source of the disease and treat it. Not just treat the symptoms (well, we all know that), which is what docs do.

She said that she uses a lab called Metametrix (I checked them up and they have an extensive GI panel and many other panels) and they seem to be cutting edge. And since she is a nutritionist, the treatment will be nutrition-based.

My question for this most-knowledgeable group is this:

Is it really possible? And should I consider having that panel and pour lots of money in working with her? Or would I be chasing windmills? Would I be duplicating the information I already have and that I get from here? I have to consider cost since I have no insurance.

I am sure many of you have done things like that. But since I am a neophyte in this game, I am still investigating..Thank you all for your wonderful support.

[Gabes-Apg]

Short answer – unless she has treated LC/CC patients before and has proven success (ie you can talk to the patients) I would hang onto your money.

MC is quite different to the other IBD’s. In the past 3 years, I have had treatments via naturopaths, acupuncture, chiropractor, Bio Impedance, Bowen Therapy. And all of these practitioners have stated that MC - MC being the inflammation, the immune system responses, impact on the whole digestion system, the types of reactions, the whole of body responses to toxins, is quite unique.

All the standard treatment protocols that they use for other IBD’s and or IBS that have worked on the majority of people before, did not work so well for MC, we had to research, test and tweak to figure out what works best.

[tex]

Monique,

Once the genes that predispose to MC have been triggered, the disease is for life. We can certainly control the symptoms (either by diet, by drugs, acupuncture, or a combination), but it can never be cured. Occasionally, some patients experience spontaneous remission of symptoms, but that it not nearly as common with MC as it is with Crohn's disease. Even for those few individuals who are lucky enough to enjoy spontaneous remission, that does not mean that the disease is cured -- it can (and does) return at any time.

Tex

[wmonique2]

Thanks, Gabes, Tex.

It is sobering. I'll save myself the agony of illusion and let downs and work on taming the lion.

[JFR]

Nothing more holistic than the dietary changes recommended on this forum, and cheaper too.

Jean

[wmonique2]

AMEN.
Working hard on that front.


thanks, Jean.

[brandy]

Hi Monique,

You'll be able to get thru it with the diet advice on this board. (Although during a particularly low period I did consider hiring a college student to cook for me.) Some foods are individualistic but the main threads of a lot of protein, overcooked veggies, replacement milks, no raw foods, fruit cooked or canned and extremely limited tie out to all of us. Fats--coconut oil, earth balance soy free spread, olive oil, and some of us can tolerate ghee.

Regards, Brandy

[wmonique2]

Hi Brandy,

Thanks for the encouragement. Some days I feel like I am in a dark tunnel with no way out. I'll do whatever it takes. I just want to feel better and have a life again.

Regards,
Monique

[Kari]

Hi Monique,

Most of us know exactly how you feel, as we've been there ourselves. One of the hardest things to deal with when treating this miserable disease is the endless patience required. I'm 2+ years into treating LC with diet alone (and some acupuncture), and still get frustrated. I've been through many different phases of recovery, with several ups and downs. The road to recovery is more like a roller coaster than linear.

All that said, I am feeling HUGELY better than before I started my diet tweaking (helped by Enterolab and MRT testing), and although I don't consider myself in full remission, I'm probably 90% there. Hang in there, and the rewards of your diligence will surely pay off!!! I wish you all the best on your road to recovery and better health.

Love,
Kari

[wmonique2]

Hi Kari,

Thank you for your encouragement and your words of support. I am most grateful for all the support I have gotten from these wonderful people.

I am seriously thinking about doing the enterolab test although I have no insurance and no one to pick up my tab for anything I do medically (or otherwise). I don't know what the MRT test does different from enterolab. I noticed that enterolab has some 15 antigens (the most egregious ones) but your list of no's is astounding. A lot more on your list...so in addition to the obvious antigens you must have done some sort of elimination to see what you react to.

I am doing the elimination diet right now, but it tedious and painful and not accurate. Were you happy with the results you got from enterolab, and were they conclusive in your opinion?

Thanks, Kari

Love,
Monique

[JFR]

Monique,

I found the the Enterolab testing very helpful. Most of us have had to pay out of pocket for it because most insurance won't cover it, so you won't be alone in that. It is true that it doesn't cover everything you might eat so testing of foods through an elimination type diet is still necessary but it gives you a good place to start. I have eliminated the big four plus all the other foods that came up positive. I have not done the MRT testing but many here have found it helpful. It includes a whole lot more foods but uses a different process so is not as reliable and doesn't catch everything and misses some things. After one gets the MRT results individual foods still have to be testing through elimination. There is no easy answer to this and no quick fix, but persistence and patience do pay off. I would add acceptance to patience as a necessary component of success. I tell myself frequently that my body is simply the way it is so no use bemoaning the fact. I try to simply accept it and go on from there. Not always easy but it does help bring some light into the tunnel.

Jean

[DebE13]

Monique,

If you bump into someone in that dark tunnel, don't be afraid, it's probably me. This forum puts a huge spotlight on the issues we face and I still feel like I'm fumbling around but the scope of the trial and error is narrowed so there's hope. Thank goodness for the hope because there is no giving up because we all know the alternative is a miserable and isolating lifestyle.

My enterolab testing was covered under insurance, thankfully, but it has to be a lab order written by your GI to even have it considered. It was an act of God and many hoops to jump through to get it covered but was worth the financial savings. I know my GI would not do it again because after the results came back, NO ONE ever said anything about them.... not one word. I took that as they most likely didn't understand them or gave no credit to their legitimacy. I understood what they meant and in addition to going GF and DF I learned soy and eggs were an issue. I felt betrayed by my body because I gave up dairy and substituted soy thinking I was doing good for my health. I would go through about 2 gallons of soy milk alone in a week and could not link it as a problem. Now I get an immediate mild stomach ache if I have it and a fatigued feeling. It's so much easier when there's immediate issues but I'm sure everyone can relate. I don't know what your GI is like but it's worth a try to ask- enterolab is so helpful and will email you or your GI the codes they need to include in their lab order so it can be covered through health insurance. I only did the basic test due to the out of pocket cost at the time and regret it. I wish I would had the more detailed testing. Good luck!

[Kari]

Hi Monique,

To answer your question, both my Enterolab and MRT test results were very helpful, and made my diet management much easier. There is a section on this board where food sensitivity testing is discussed. You will find our collective test results from both Enterolab and MRT tests there, in addition to discussions about the tests and our results.

I agree that doing elimination testing on your own is very difficult, as well as time consuming, since when the gut is inflamed, we seem to react to everything. I believe insurance companies will cover the test expense when the tests are recommended by an MD. However, as you probably have read here, most GI's and PCP's are clueless about how diet affects MC, and believe it has nothing to do with it .

If you can afford the testing, I highly recommend it. When I did Enterolab testing, the only foods they tested were gluten, dairy, soy, eggs and yeast, but now they offer a somewhat expanded panel. Anyhow, since Enterolab is a more reliable test, I would start there. If after a few months of eliminating what they are recommending (in addition to what you can figure out on your own) you are still having problems, then it is time for MRT. Anyhow, that's how I did it, and it worked really well for me.

Best of luck to you - I look forward to follow you progress from your posts here. If after exploring the section on food sensitivity testing you still have questions, please don't hesitate to ask.

Love,
Kari

[wmonique2]

Thanks Kari, Jean, Deb, Brandy. I have learned a lot from all your responses. I am going to take the enterolab test first and see what happens. I am at the end of my rope-dope.


And Deb, yes, you might be the one I stumbled into on that dark tunnel :-)

Kari---I love your bread tag line. In my dreams I am having a baguette with butter and jelly. Ah, French bread! (I am French, so you know I DO miss it) !

I love you all, guys!

[Joefnh]

Hi Monique certainly diet is the best treatment and as mentioned many of us use either MRT or Enterolab testing or both to help refine the diet. By the time I decided on testing, I used MRT testing as I already had determined what I thought were the basic issues with gluten soy and to some degree dairy. I found the MRT tested a broader range of ingredients and medications and did provide a way for me to refine my diet further.

As far as other therapies personally I found acupuncture to be quite beneficial although I have not tried others as of yet.