Update on my GI visit

[celia]

Hello Everyone,

I'm very lucky. Unlike Christine and Liz, my GI doctor is very compassionate, and she is knowledgeable about MC. I saw her yesterday for the first time after receiving my LC diagnosis in the mail around Jan. 20.

In essence, she is very clear that medical science is limited and doesn't have all the answers. She thinks my extreme range of food reactions is an immune-mediated response, but she doesn't know why or how to reverse it.

She suggested I see a popular local allergist/immunologist, but I've already seen him (before the LC diagnosis) and he determined that I don't have any classic food allergies. I'm not sure if it would be helpful to see him again now that I have the LC diagnosis.

These are her impressions and gut reactions:
-Since I don't have D., the LC is probably patchy and not throughout the entire colon.

-She doesn't think I have malabsorption based on some recent blood work I had done which shows normal serum calcium, vit D, and albumin (among other normal results).

-Her gut feeling is that my small bowel is working just fine, especially since I don't have D. which would indicate villous atrophy without or without Celiac disease. But she is willing to do an endoscopy, if I wish, just to be sure. That wouldn't be untill May because she is so booked up. By the way, she is aware that gluten intolerance commonly exists with MC.

-If the trigger was a bacterial agent or bacterial endotoxins, she thinks it's unlikely that one or the other is still present in the body.

-She did order a celiac test for me prior to this appointment, but the results aren't back yet. But even if I have CD, being off gluten for as long as I have, she doesn't think the test will come back positive or that an endoscopy will reveal damage. She says that 99% of her patients with CD have normal mucosa on their one-year followup endoscopy, so even if I had damage I probably don't have it now. She said that even if the test doesn't reveal CD, it could be a false negative, and if I react to gluten foods, my body may very well be giving me a message that I should avoid them.

At the end, she said that medicine just doesn't have all the answers, and that many people turn to alternative medicine for help. Which is essentially the path that I've taken, which she knows. She also said that I probably know more about available tests for bacterial endotoxins than she does, which is true! They are not tests that are available in conventional medicine.

She is terrific as far as GI docs go. She spent about 45 minutes with me and answered all my questons.

I was a little frustrated when I left just because I long for a clear answer. Once I slept on it, I realized that in essence what I learned from her that I am probably much better, and that it's just going to take more time to overcome these immune-mediated responses to food.

I am just a little frustrated because I am not completely well yet and it's been two years now since this all began. It made me realize I should just stay on my natural healing track, avoid my food triggers and be patient. After all, I am really lucky that my LC is so mild and that I am not constantly running to the bathroom and suffering like so many others on this site and others who don't yet know that they have MC. Many of my symptoms have dissolve as I have changed my diet and followed a natural approach to healing. So I must be doing something right!

Naturally, I would really like to know if I have CD or GS. I am going to get Dr. Fine's test for gluten sensitivity, although there's a possibility it will be a false negative too. We'll see!

Take care everyone,
Celia

[CAMary]

Celia-

Honestly that is the most positive GI visit I have *ever* heard of in regards to this condition...perhaps since you have a female doc? My doc is pretty good, but he doesn't believe in the gluten connection - but since I have gone GF, I don't have to see him anymore, so that solves that!!

We all want an easy answer/expalnation/fix, but it is true, medical science does not know a lot about MC - we have to educate ourselves and pursue a plan which allows us to maintain the highest quality of life, whatever that plan is....you seem quite adept at the "educating yourself" portion of it, so you are definitely on the right track!!

Mary

[tex]

Celia,

Your GI doc is one in a million. Definitely a jewel, in a field strewn with zircons.



I don't recall how long you've been GF, but if it has been longer than a year, the odds of getting a valid result for gluten antibodies, with any type of test, are pretty slim.

Wayne

[celia]

Mary, I think there are two things my doc has going for her..as you point out, she's a woman. Secondly, she is relatively young. She was trained ten years ago so she's not wet behind the ears, and she is more up to date on recent developments in the field.

But I think you are on the right track about not needing to see the GI doctor. I probably won't be going back until my ten year colonoscopy check!

Celia

[celia]

Wayne,

It's a little hard to say how long I have been gluten free. I stopped wheat 10/04. I stopped wheat a few months later. But I was eating plenty of oats during the first three or four months of 05 (which are an uncertainty). And some minor forms of gluten might have slipped in until I became more stringent. My guess is 7-9 months. But I don't know for sure. I had a test in March of 05 that was negative. You are no doubt right, but since my insurance pays for it, I wanted to give it one more try.

Celia

[barbaranoela]

Celia----a great post and your Doc. is a *keeper*

And as Mary said *HONESTY* what a TREASURE that is~~~

Sometimes *older* doc.s,in their field, get *STUCK* in a one way street and that can cause alotta problems--

Keep going as U have been---sounds great to me!!!

luve, Barbara

[annie oakley]

Wow Celia, I am so glad you have a great GI doc. It makes all the difference in the world when you have a compassionate Doctor. I like what Wayne said "a jewel in a field strewn with Zircons" LOL LOve Oma