Update from Dr Appt today

[Gayle]

Kim,

Thanks again to all of you and if anyone can relate to suggest anything, I'm all ears

Before you are scheduled for a visit with what ever GI specialist you will be seeing at the University ......

1. Try to find out which Physician(s) on the GI staff at the University have a primary interest in issues involving the likes of 'colon disorders', 'inflamatory bowel diseases' and 'diarrhea'. And, if possible, see if you can find out if someone on the staff at the University has Published some kind of article(s) on MC.

2. Make sure that you are in possession of all the reports with respect to the findings of the 2 recent colonoscopies. Be sure to bring them all along to your 1st visit.

3. Find out/Know the exact location where the pathology slides from the biopsy’s taken during these past 2 colonoscopies are located. You will probably be asked to sign a release for these slides to be sent to the University and read (confirmed) by someone in the University’s pathology department. (DO be prepared to be able to comply with this)

4. It is very possible that the new physician may want to “take another look” – but this might depend upon your ability to fulfill #3 above. And (and I my be being rather cynical here) that may also depend upon the type of insurance you have. As you have already received a diagnosis of MC/LC being present, it maybe rather doubtful if this (now 2nd opinion) would want to go ahead with another colonoscopy, without being able to justify another look to insurance this soon.

5. Remember, you are being seen at University on referral by your local Doc who has already done quite a bit of basic work up here. In fairness to the new Physician, he/she will need to have access to ALL the information gained to present --- and you are responsible to see that is provided. Don’t depend on someone else to do this as they may, and may not, all be sent.

Best of Luck to you on this new venture,

Gayle

[tex]

Tex, IYO, is it rare to have markers of LC in colon, small intestine AND lower part of stomach?

No, I believe it is actually very common, but traditionally, most GI docs have not bothered to look for the markers of MC in the stomach and the small intestine, since once they find MC, they consider it to be a disease of the colon. That trend seems to be changing, as time goes on. I believe that most of us here, have at least small intestinal involvement, and many of us also have stomach involvement, as evidenced by the fact that quite a few of us experience gastroparesis and/or gastritis.

Also based on the research I'm doing now, generally there are signs of gluten sensitivity that can be spotted during such a procedure but my report said, "..does not reveal blunting of the villi" "not diagnostic of celiac sprue". Would this suggest I'm not gluten sensitive? Also finding that since I did test positive for H. Pylori that H. Pylori could have been onset of MC.

It would certainly suggest that you're not gluten sensitive to most mainstream celiac docs. However, they are wrong, and the day is fast approaching when they will be forced to admit their long-standing mistake.

I'm not aware that H. pylori has ever been officially recognized as a possible cause of MC, though it's not impossible that such a connection might exist. I have a hunch that many more cases of MC are caused by drugs used for treating various disorders, than are caused by the disorders themselves, but that's just a guess, so I could certainly be way off base with that guess.

Gayle's suggestions might be able to save you from having to do another colonoscopy, if your GI doc has a good set of slides available for review by the new doctor or team. However, remember that teaching hospitals do emphasize teaching, and students learn by doing, (or by observing procedures).

Tex

[kimtg68]

Thanks Charlotte. I actually have already started acquiring copies of my records even before I knew this was going to happen. I had decided to start compiling them for my own research. Turned out it was a good thing. I think we all should be able to talk with our doctors freely whether GI, PCP, pediatricians, etc. Although I'm still very much in a learning situation, I am figuring out that it is MY body and if I am going to go the distance to educate myself on it and what's going on, I should be granted the opportunity to have a say in what others decide to put in it or do to it, right?

[Polly]

KIM!

Just jumping in to let you know how PROUD of you I am! WAHOO! YOU GO GIRL!

I have no doubt that you WILL get well, based upon the way you are courageously taking charge of your treatment plan. You are an inspiration, to say the least. Just one little comment - I don't mean to rain on your parade, but please don't put too much hope in your appt. at the U. of Alabama. I honestly believe that you will find the answers here more likely than there. Scary, but true, IMHO.

Keep up the good work - you are a quick study!

Love,

Polly

[kimtg68]

Good morning PP! I hope everyone is feeling ok today. I read the comments on this thread last night but was too tired to do the research in response. So here it is:

Tex wrote:

I'm not aware that H. pylori has ever been officially recognized as a possible cause of MC, though it's not impossible that such a connection might exist.

Thanks to Harma, I believe it was, I followed a link that was posted under the 'Treatment' section, which is http://sites.google.com/site/jccglutenfree/home and found the following and much more:

Some studies report the lymphocytic gastritis in almost 45% of cases of sprue, with the gastritis regressing in response to a gluten-free diet, while others report a correlation of lymphocytic gastritis with serologically and/or histologically confirmed H. pylori infection, with the lymphocytic gastritis being cured by H. pylori eradication treatment in a high percentage of the cases

There is actually loads of interesting studies and ideas on this PubMed website.

Gayle: Thank you, thank you for the wonderful advice which I am already working on but will add to my list a few additional wise suggestions you gave.

Polly: You didn't rain on my parade. I have learned that this place is a wealth of information and who better to learn from then those that actually have and are living through it. But to date I've had the worst experience with my doctors in just trying to get to a diagnosis. Now that I have that I can see that I'm about to embark on a new challenge of finding someone to treat me. I KNOW I am not going to find that locally as I've just about exhausted my choices of doctors on my insurance plan. I will work at not getting my hopes up too high with UAB (I will truly have to work hard at that).

Thanks to all for your praise and encouragement but most of all for being the best darn teachers I've ever had

[kimtg68]

Gosh darn it. I worked hard on that last post and something went wrong I will start over again and repost it later. Time to start my Saturday chores. Until later......

[wonderwoman]

When I plan on writing something longer, I always write it on a word processing document and then copy and past it here. That way I can save it on my desktop and am sure to not loose it.

I am very tired today. I haven't been sleeping well. I think it's time for a nap.

[kimtg68]

I'm trying to repost this message from Friday night. I've had to remove all emoticons and url links to try. Here is goes......

Good morning PP! I hope everyone is feeling ok today. I read the comments on this thread last night but was too tired to do the research in response. So here it is:

Tex wrote:
"I'm not aware that H. pylori has ever been officially recognized as a possible cause of MC, though it's not impossible that such a connection might exist."

Thanks to Harma, I believe it was, I followed a link that was posted under the 'Treatment' section, which is http://sites.google.com/site/jccglutenfree/home and found the following and much more: "Some studies report the lymphocytic gastritis in almost 45% of cases of sprue, with the gastritis regressing in response to a gluten-free diet, while others report a correlation of lymphocytic gastritis with serologically and/or histologically confirmed H. pylori infection, with the lymphocytic gastritis being cured by H. pylori eradication treatment in a high percentage of the case." There is actually loads of interesting studies and ideas on this PubMed website.

Gayle: Thank you, thank you for the wonderful advice which I am already working on but will add to my list a few additional wise suggestions you gave.

Polly: You didn't rain on my parade. I have learned that this place is a wealth of information and who better to learn from then those that actually have and are living through it. But to date I've had the worst experience with my doctors in just trying to get to a diagnosis. Now that I have that I can see that I'm about to embark on a new challenge of finding someone to treat me. I KNOW I am not going to find that locally as I've just about exhausted my choices of doctors on my insurance plan. I will work at not getting my hopes up too high with UAB (I will truly have to work hard at that).

Thanks to all for your praise and encouragement but most of all for being the best darn teachers I've ever had!

[tex]

"Some studies report the lymphocytic gastritis in almost 45% of cases of sprue, with the gastritis regressing in response to a gluten-free diet, while others report a correlation of lymphocytic gastritis with serologically and/or histologically confirmed H. pylori infection, with the lymphocytic gastritis being cured by H. pylori eradication treatment in a high percentage of the case."

Yes, but you are talking about two separate issues. An H. pylori infection does indeed result in lymphocytic gastritis, but neither the gastritis, (nor the H. pylori), typically cause MC. Remember, MC is by definition, a disease of the colon, so by definition, it has to exist in the colon, (first). When the gastritis is due to an H. pylori infection, then, of course, eliminating the H. pylori infection will virtually always resolve the gastritis. In that case, it's a separate issue.

While gastritis can occur as a "side effect" of MC, that does not mean that the reverse is true, IOW, that gastritis, (due to an H. pylori infection), can cause MC. Instead, if gastritis is associated with MC, then by definition, the gastritis would have to occur as a satellite issue, due to the MC, (in fact, probably due to gluten sensitivity), rather than the other way around. I haven't seen any documentation that H. pylori can cause MC. That doesn't mean that it's absolutely impossible - only that no one has documented it. I realize this is confusing as all get out, but I hope you can follow what I'm trying to say.

Tex

[kimtg68]

OUCH Tex! That hurt my brain. LOL I had to read it three times and slower each time BUT I finally got it. So even though I had H. Pylori that could have caused the gastritis (or MC could cause the gastritis as well), H. Pylori, at least to date, has not been linked to cause MC. So the MC appears to be a separate case all together for me. Thanks Tex for setting me straight on that. This all can be a bit complex.