What to eat

[tex]

Arlene,

Yes, unfortunately, a typical time, (without any meds), is 6 months or longer, (it took me a year and a half, but that was because I just couldn't believe that I was sensitive to so many foods - when I finally cut all of them out of my diet, at the same time, I was in remission in about 2 weeks). A few people are lucky, of course, and can see major improvement in just a few weeks, but for most of us, it's a long struggle. That's why we suggest Entocort, for anyone who wants to speed up the process. Of course, being able to successfully withdraw from the Entocort, without a relapse, is another issue, because corticosteroids do interfere with the healing process.

I suspect that those of us who have continuous symptoms for years, (without treatment), and those who have many food sensitivities, probably accumulate a lot more damage, and therefore require much longer to heal, than those who are quickly diagnosed, and/or have fewer sensitivities. Also, age makes a difference. Kids heal much faster. Camryn, for example, (who was only two and a half years old, when diagnosed), was able to reach remission in only 2 or 3 months, even though she was sensitive to gluten, dairy, and soy. Her pediatric GI doctors couldn't believe her fast recovery, by diet alone, because she was really sick. I'll bet they're still scratching their heads.

Fortunately for Camryn, her mother believed us, and trusted us enough to go against the advice of all the doctors at the children's hospital, where she was diagnosed. We've had numerous other mothers join, with kids diagnosed at a very young age, but they simply couldn't bring themselves to break away from the advice of their doctors, so as far as we know, their poor kids are still suffering.

That tears my heart out, to think about that, but what can we do? There's no way that we can command the respect that the medical community holds. All we can do is point to our record, (which, I have no doubt, is far better than at least 90% of the GI specialists in this country). Most patients go from one GI doctor to another, and when they don't come back, the doctor automatically chalks them up as a successfully resolved case.

Tex

[TooManyHats]

If I was eating all kinds of stuff and not taking any medication then maybe I could understand why I'm not getting better. I suppose this is why I'm frustrated, I did listen. The only thing I am still trying to avoid is steroids.

[tex]

The damage from gluten is what takes so long to heal, (and it takes a long time for the antibody production to diminish to a point at which we no longer react to them). This is surely an individual issue, that's difficult to quantify. We respond to cutting out all the other food sensitivities very quickly, (usually within a few days or so). Therefore, response time to the diet, is mostly influenced by our level of sensitivity to gluten, and how long the condition remains untreated, but any other problem foods in the diet are also a factor, on a shorter-term basis. Also, the longer gluten-sensitivity remains untreated, the more food sensitivities are likely to develop, IMO.

I wish it were easier to pinpoint the problem, because I can certainly feel your frustration, but every case is unique. Hopefully, you're getting close to remission, but we usually can't tell, until we arrive.

Tex

[Gabes-Apg]

Arlene
i dont think i knew the true meaning of patience or tenacity until MC came into my life.

the first 6 months were a roller coaster ride, eliminate gluten, feel great for 4 weeks and then bang, D is back, eliminated yeast, felt great and then another low, eliminated dairy, felt good and weeks later another low, this time it was Soy.

Also being aware of how your body reacts to non food related triggers such as stress, colds and flu etc.

I think these days i am on the caraosel rather than a roller coaster, there are still some highs and lows but not to the extremes of that first 6 months. It is 15 months post diagnosis for me, i am confident that the inflammation is almost gone, the leaky gut is vastly improved and i have the MC management blended into my life/work routines.

My focus at the moment via the BioImpedance, lymphatic massage and supplements is to nurture all of my body not just the gut and repair the damage from years of digestion issues.

[TooManyHats]

I'm eating very few foods, about 7 different things. I haven't had g/f bread or the like (or anything baked) in about 2 months. We cook everything ourselves. I'm pretty sure I'm dealing with histamine issues because left-overs seem to be worse for me. Salmon or cod has me in the bathroom in 30-40 minutes, left over pork roast 1 hour, and eggs 2 hours. Today I'm trying the Histame that Mary Beth recommended. I'm itching less today, so I'm hoping that's a good sign. I took the liberty of increasing my medication since it was so clear that I wasn't on a therapeutic dose. I made an appointment with my Dr for Thursday to try to "talk her into the increased dose".

The stress here is what it is, there's not much I can do about it. I am looking into accupuncture. Can someone please tell me what I should be looking for when picking a provider?

[sarkin]

Arlene, that's a great observation about leftovers. Last week something that worked well wasn't so good the next day. Maybe it was too soon to draw conclusions, quite honestly - but I will keep that in mind, and I never would have thought of it on my own.

I'm going to let Joe answer about the specifics of acupuncture for MC - I've had it for other conditions in the past, and the single most important thing in those cases was finding someone I trusted and felt comfortable with. In addition to Joe's thoughts about the kind of skills your acupuncturist will need to help with these digestive issues, it might be worth it to ask around your community to see if you can find someone who tried acupuncture and loved practitioner. It made a great difference for me.

I think you can find someone who will truly help you (and I hope the search doesn't try your patience further). I am very interested to learn more about lymphatic massage, too. Gabes, that was uplifting and helpful - thanks.

Sara

[tex]

Can someone please tell me what I should be looking for when picking a provider?

Someone who understands IBDs, if possible, or at least someone experienced with dealing with digestive system issues.

Tex

P. S. Oops, sorry Sara. Obviously, I'm not Joe, but apparently I started writing this post before yours showed up in my browser.

[Gabes-Apg]

Arlene, i had been seeing an acupuncturist for 6 years before my MC diagnosis.

most of my treatments before we knew the truth so to speak, would be treating my immune function, liver and kidney. once i had the diagnosis and based on the information and discussions on this site we were able to approach the treatments slightly differently.

both my naturopath and acupuncturist said that the treatments that worked most of the time for IBS dont work for MC.
We did do work on inflammation, as the acupuncture can not treat or eliminate MC directly, what it does is help the systems that are under pressure from the MC, immune, inflamation inpact on the digestive process (ie spleen, pancreas, liver etc)

i would seek a practitioner that has treated people with Diagnosed IBD's such as Crohns etc

[Joefnh]

Arlene & Sara I would defer to Gabes as our resident expert on acupuncture (she introduced it to me) As Gabes mentioned finding a practitioner that is knowledgeable about treating IBDs is important. Keep in mind that acupuncture does not generally treat a specific localized problem, but helps treat the systems of the body to aid in the bodies ability to deal with a problem.

For instance in my case since I take medications which can challenge the liver and pancreas and that I have two IBD's, we focus on supporting those areas of the body by improving blood flow and helping with inflammation. I find that after a treatment I feel far more relaxed and energetic.

As Sarah mentioned finding someone that you are comfortable with is quite important as well. This advice goes for anyone in your health care team.

--Joe