An Update from Courtney

[Courtney]

Hi all,

I just wanted to check in and let you all know that I'm still around. This is the busiest part of my year (November-Mid-December), so I'll only be able to post sporadically for awhile. I have been checking in to read posts, though, and I'll try to keep that up.

So I've been trying an elimination diet for about 2 to 3 weeks (GF, DF, CF, SF, Corn free, EF). It's really hard to find something to eat! I've been eating a lot of rice and things made from rice. Boring and frustrating when I can never find anything that doesn't have all that. And I am no better. (Been GF for almost exactly 3 months now). Last weekend my husband had a conference in Chicago, though, and I went with him and found lots of restaurants with GF menus. I had to be careful about the other ingredients in the dishes, but really was able to enjoy myself with everyone else anyway.

My doc, who I was frustrated with, is back in my favor bc at least he is making an effort to help. He called me twice last week to check in, and he talked to an LC specialist whose name I cannot remember right now. Their plan is to find out what is causing the problem, the MC or the celiac. They want to test my TTG levels again to see if I'm still getting some gluten in my diet inadvertantly. That's fine with me, although it's very hard for me to have blood drawn bc I have such horrible circulation that the blood just will not come out even when they get the needle in. It's even worse now that it's cold! They also want me to have a sigmoidoscopy, which he described as a less invasive colonoscopy. The reasoning was to take biopsies to see if the colitis is still active. (Seems like I could tell them that! ) But the reasoning is if the colitis is not active, and the TTG levels are still high, I could have refractory celiac sprue, which does not respond to the GF diet. I don't really want to have the sigmoidoscopy. Cost and inconvenience aside, I just don't think it's necessary at this point. Anybody have any thoughts on that?

Well, I have been making an effort to get as much sleep as possible, although I still am averaging only about 6 and a half hours a night. I sleep lightly anyway, and when I wake up in the middle of the night with raging D, it's often hard to go back to sleep. So I'm going to go get ready for bed now, and dream of feeling better soon.

Best to all, and thank you for any advice you have on this.

Courtney

[tex]

Courtney,

It's good to hear from you again, but I'm sorry to see that you're still not noticing any improvement, even after all your efforts. This can be a very frustrating disease, obviously.

I agree with you, there is nothing to be gained by a sigmoidoscopy exam at this point. Besides, the worst part of the exam is the cleanout, and that is the same for both a colonoscopy and a sigmoidoscopy, unfortunately. Have you ever read what Dr. Fine has to say about the combination of MC and celiac sprue? Based on his experience and insight, I believe that it's pretty safe to say that it's the MC that's causing your persistent symptoms, not the celiac sprue. Celiac sprue is a realatively "well behaved" disease - cut out gluten, and remission is virtually assured. MC, on the other hand, is not at all "well behaved", and with it, remission can be very elusive. Most doctors are unsuccessful in treating MC, so why would they suspect celiac sprue to be the dominant problem, in a patient with MC? Here's a quote from Dr. Fine's website:

How are microscopic colitis and gluten sensitivity (or celiac sprue) related?

I have shown in a previous study that the most common cause of diarrhea in patients with celiac sprue treated with a gluten-free diet for many years is microscopic colitis. Other individuals are found at the time of diagnosis to have both of these syndromes. this relates to the fact that the same immune system regulatory genes, called HLA, are involved in producing both syndromes, as well as many other autoimmune syndromes. The celiac sprue diagnosed in patients found to have microscopic colitis is usually of a mild variety, and appears to me to be the result of the colitis itself. This occurs because the genes causing microscopic colitis are also programmed to react with gluten if they are triggered to do so. This is why people can go their whole lives withjout apparent gluten sensitivity and then suddenly become gluten intolerant. Thus, testing for the presence of gluten sensitivity in patients with microscopic colitis, sometimes combined with assessment for the presence of the gluten-sensitive gene, is necessary in many if not all such patients.

The red emphasis is mine, of course. Anyway, in view of the above quote, obviously, you have MC, and obviously, you are gluten sensitive - both those issues have been proven by your diagnoses.

That quote is from this page:

http://www.finerhealth.com/Educational_ ... c_Colitis/

It's good to see that your doc is making an effort to help, but the sad truth is that neither he, nor the LC specialist that he is is conferring with, seem to understand the relationship between MC, celiac sprue, and most importantly, gluten sensitivity. My guess is that neither one of them understands that MC is part of the gluten-sensitive spectrum, or if they do, then they don't realize the significance of that relationship. The fact of the matter is that refractory sprue, is probably virtually always undiagnosed MC, but most doctors seem to be totally unaware of that concept.

Healing takes a while with MC, and probably, you are within two or three months of remission, (since you don't have double DQ2 genes), but it's impossible to pin down that time, since we're all different.

To further illustrate why another 'oscopy exam at this point in time is without virtue, consider the fact that there is absolutely no possibility that your MC could be resolved, if you are still accidentally ingesting any amount of gluten. The reason why you have MC in the first place, is because of the gluten sensitivity. Therefore, that exam can not accomplish what they intend to accomplish, simply because they don't understand MC, nor do they correctly understand the etiology of gluten sensitive enteropathy.

At least that's how I see it.

I hope you surprise us both, and achieve remission in the very near future. Sometimes, it can happen literally overnight.

Tex

[Courtney]

Thanks, Tex. You are, as always, a wealth of information and a blessing to the MC community.

I'm glad you agree with me that the sigmoidoscopy is not necessary. The docs' attitudes seem to be "fix it as fast as possible," which I can understand, but I don't think they realize that achieving long-term remission will probably take some time. I think I will have the TTG levels checked, because that's fairly easy and inexpensive, and I'd like to know how successful I've been at cutting out gluten.

Thanks for posting that quote from Dr. Fine. It's very interesting to me, because the celiac is in fact quite mild, i.e., there was some flattening of the villi, but nowhere near enough to cause the type/level/amount of D I've been having.

A question for you: Does everyone have HLA genes, or just some people?

Thanks again,

Courtney

[tex]

Courtney,

If you should happen to get a positive result on the TTG test, don't let it worry you unnecessarily, because from what I've read, some celiacs can still show seropositive results for up to several months after starting the GF diet. (That's assuming that you had a positive TTG result, at the time of diagnosis). Did you actually have a positive TTG result when you were diagnosed, or a positive EmA, (antiendomysial antibody), result? The reason I ask, is because those of us who do not meet the criteria for a celiac diagnosis, virtually never test positive to either of those blood tests, no matter how sensitive to gluten we might be. Just out of curiosity, was your Marsh stage rating a IIIa, or IIIb?

Yes, all humans have HLA genes, in fact, I believe that most vertibrates do. Actually, a very high percentage of the general population carries either celiac genes, or some other gene that predisposes to gluten sensitivity, but disease is actually triggered in only a relatively small percentage of those individuals.

Tex

[Courtney]

Hi Tex,

Yup, I tested positive for both of those.

TTG Result: 79.9 U/ml...Normal is <4.0 U/ml
EMA Result: Positive...Normal is Negative

The duodenum biopsy report says this: "The degree of lymphocytosis within the duodenal biopsy is consistent with a Marsh Type I pattern. Serologic studies for celiac disease may be helpful."

Hope that tells you something interesting.

Courtney

[tex]

Courtney,

Yes, that definitely answers my questions. That's good information to have, for future reference. You weren't kidding, when you said the villous damage was mild. (That's good, though, because it should minimize the chances of having a significant malabsorption problem).

That's probably why your GI doc and his consultant are so puzzled about your failure to achieve remission by now. With Marsh stage I damage, your small intestine should have healed rather quickly, on the GF diet, so you should be in remission by now, (if it weren't for the MC inflammation, complicating matters).

Thanks for the info.

Tex