having major acceptance issues (blame the doc)

[DebE13]

Hi, I've been dealing wit my dx of CC since 2007. I am like you and skeptical of EVERYTHING since I've tried just about everything and have spent thousands of dollars out of pocket. Things did not start to turn around for me until I started following the advice offered here. It works. Not nearly as fast as I would like and that's the hard part. It's easy to get side tracked and revert to old habits but put in the effort even though it will not be easy. It does get easier to accept. I still have D and am dealing with some thyroid issues (not dx yet but on my way to something) so I know how the fatigue, coldness, etc gets old fast. I think of it in simple terms- I have issues (lots f them), I want a dx, and a treatment that will work, and I will be better. Everything we deal with is far from simple.

Tex is right, if you are not diligent and cheat with your restrictions- dont bother because you will just be making life harder for yourself because you won't heal and will be frustrated that you have given up enjoyable foods. Come to terms that you may have to eat the same meal 3x a day. I've had a very difficult time figuring out what I can and cannot eat but you may notice improvements much quicker and it may not ave to be that drastic.

I saw a doc who practiced functional medicine and had the blood test done. I spent a whole summer taking a sh**load of supplements and eating from a rotational diet that may or may not ave been helpful with absolutely NO improvements even though i was GF. Nothing covered by insurance either. I had the Enterolab tests done and found I also had issues with soy, dairy, and eggs. The blood test didn't reveal those. I drank at least two gallons of soy milk a week among other soy based foods. What a waste of my money! It is expensive but is an investment.

My GI also trivialized the seriousness of the dx. I was told diet has nothing to do with it and go ahead and eliminate gluten if I wanted (but they had no interest). I was able to talk my third GI doc into writing a lab order for the first Enterolab tests I had done which my insurance covered. That was nice! After my results came back, no one there ever brought them up. I took that as they saw no value. It meant everything to me but that was just the beginning of a very long road. The best part about it is there are so many friendly faces along the way with great advice. Come here often, the people here fill a very large gap in understanding MC and offer comfort and support. I never thought I would feel so comfortable revealing some of my most embarrassing issues because there is no judgement- just concern because we've all been through it.

Hang in there.

[fluffypoodle]

thank you so much everyone! i really appreciate you taking your time to respond!

I ordered the Enterolab Panel A this morning, and am excited for it to get here so I can hopefully see some answers on paper. I've been tested and I know I make IgA, but in the back of my mind I'm almost nervous that I'll test negative to everything and be more confused than I already am!

Isn't it funny that my fear is the negative result and not the positive one? lol.

[tex]

We tend to fear the unknown, because it's human nature to assume the worst. As a result, we are much more comfortable when we understand exactly what we are dealing with, because then we can formulate a plan of action.

Congratulations, you've taken a major step toward getting your life back.

Tex

[carolm]

HI Fluffypoodle--

When in doubt, look at the facts.

95%+ of us on this site are gluten sensitive, followed by dairy/casein (75-80%, I believe) and soy (50%). We are 7x more likely to have thyroid issues than the general population. These numbers are based on the stats Tex has gathered from the members on this board, all diagnosed with MC.

You can look at the lists of other members Enterolab results and see how much they vary, so it's not just that we receive a blanket result from them. If you don't trust labs, maybe you at least trust DNA testing. My DNA results showed I had two markers for gluten sensitivity. THAT information alone was enough to tell me to get my diet in order or face the coming of more autoimmune diseases-- like fibromyalgia, lupus, MS, RA, etc. These results have not steered me wrong, nor has the advice on this board.

I strongly urge you to listen to the veterans here and get the Enterolab tests. Your doc and your husband are not living in your body. This is something you have to do for yourself.

This support group is full of people who have faced down their MC and found a way to remission. NO ONE else has this wealth of information-- not even our docs (and I have a good one who believes diet plays a role). Who would know better than people who are living with it? And we are on your side.

Carol

[carolm]

Fluffypoodle-- you, Tex and I must have been typing simultaneously. I'm glad you ordered the panel too. I don't think you will be sorry. I wasn't happy about the adjustments I needed to make but there's no doubt they were necessary. And successful.

Keep us posted.
Carol