tiredofdoctors!!!

Since a well-known friend of ours is having difficulty getting Altoids up in the North , I thought I would purchase some for her and send them there.

PLEASE NOTE: The tins I purchased of Altoids Smalls specifically state that they contain Wheat Maltodextrin.
The Altoids gum contains Isomalt -- I was a little concerned because I have been chewing that, as well -- but I Google'd it, and found this, so it looks okay:

http://www.palatinit...dients/ISOMALT/

If you have Altoids Smalls, please check the ingredients on the back. Just trying to keep my Sillyak friends healthy.

(And you guys thought I couldn't pull this off without being rediculous, didn't you????)

I have a question about Enterolab.  It's kind of grose, but hey -- on this board we talk about poop enough that everyone is pretty comfortable with the subject.

I have neurological celiac.  I have only elevated Antigliadin antibodies.  My antitransglutaminase and antiendomysial antibodies were negative, and the biopsy(ies) on my small intestine were negative, as well.  My GI even had a GI celiac specialist review the slides himself vs. just taking the pathologist's word for it.  He did this mainly because I've had a life-long history of "irritable bowel", "ulcerative colitis" or "spastic colon".  

My question is this:  I've been gluten-free for almost two years.  I do have products which contain casein, have stopped drinking milk because it makes a heinous rash appear on my face, and have tested positive on scratch tests to both milk and casein.  My biggest question lies in this:  Unless I take Miralax two times a day, I don't poop.  At least not on my own.  Ever.  This is part of the neurological damage.  

So -- all that garbage being said, can Enterolab still find antibodies, etc. after I've been off so many things for this long?  Also, do they do the testing for genetic markers?  My (former!) doctor's office only did bloodwork for HLA-DQ2 & HLA-DQ8 -- and no sub-categories.  They didn't have the capacity to do HLA-DQ1, etc.     Do you need a physician's order to have these tests run?  Are they expensive?  Have you been satisfied with the information they have supplied you?

Any help / suggestions you can give me would be greatly appreciated.  Even being an "old-timer" with regard to my diagnosis time, I still have tons of questions.  Thank you,  Lynne

It was bound to happen eventually, but I got fired by a doctor -- my neurologist!  While I want to say that it was my own "fault", I'm not too sure that's the case.  I CERTAINLY think I was provoked!   

I went in for my every three month test your reflexes -- they're getting worse -- test your muscle strength -- it's fine -- "I don't know why that's happening" visit.  I had a list of questions which I wanted answered this time!  He has blown off my questions for the last three visits, and I needed to have them addressed.  I started to ask them, and he said, "Let's get this out of the way first", meaning the reflexes, etc.  That way, he could start walking out the door before we get to my questions.  That happens EVERY time.  

So, he finishes up, tries to leave and I said, "Wait.  I have these questions."  I asked him about doing antigliadin antibody bloodwork, since I haven't had it done in over a year.  He tells me that "everything he's read" -- articles I gave him -- indicate that I'll always have elevated antigliadin antibodies, and testing really doesn't tell much.  HOW ABOUT IF I'M ACCIDENTALLY INGESTING GLUTEN, SINCE I DON'T HAVE GI SYMPTOMS?????????  Also, everything he has read -- they all recommend testing at least every six months.  Then, I ask about other things, and EVERYTHING I said, he shot me down!  I asked him about what the geneticist had sent him.  He said that he hadn't received anything.  I WAS ON THE PHONE WITH THE GENETIC COUNSELOR WHEN SHE FAXED IT TO HIM FOUR WEEKS BEFORE MY APPOINTMENT!

Then, he tossed the straw that broke the camel's back:  He asks me what was on my neuropsychological evaluation.  Obviously he didn't know that it's a FUNCTIONAL evaluation that is designed to target areas of the brain which aren't working properly.  So, I told him that it said that I had Occulomotor Apraxia and that my MMPI (Minnesota Multiphasic Personality Inventory) was well within normal limits, with the exception that I did have some increased focus on a chronic illness.  HELLO???????  I then made the statement that probably started me on the downhill slide . . . . I told him that the test was given two years ago, and my focus on a chronic illness is virtually NONE because I couldn't give a rat's a** if I ever saw "any of you doctors" again.  As I was leaving I told his secretary that he saw my lips move, but didn't hear a word I said.  I called the next day and told them that, since NOTHING was accomplished during the visit, I didn't want my insurance nor myself billed for it.  I made the comment that my husband said he must be hitting the "senior slide" . . . when physicians in their mid-late 50's are looking toward retirement and really don't want to take on challenging patients.  They just want the ones that are the "same old same old" so that they don't have to do any research with regard to their condition.

A week later, I got a notice that, while I was at another doctor's appointment, I received a registered letter from them!!!!!!!!!  Still haven't picked it up.  I figure it this way:  I pay HIM.  That means I get to fire HIM, not vice-versa!

When I called my friend who is my former professor, she cheered!  She said, "WAY TO GO!!!!!  Spoken only like Lynne Ellingsworth-Wagner could!!!!!  I'm so proud of you!!!!!"  Given that I have MUCHO respect for this lady, I'm thinking I'm not too unhappy about this whole situation . . . . .  

Guys -- must wreak havoc this month!!  Last month we didn't get into any trouble . . . . Scott, get your nitro pills ready . . . . !!!!! (Just kidding -- as we all know, I'm on a mission NOT to get into trouble [much] this year)

Just wanted to let you guys know . . . . Metta broke her arm earlier this week. Because Arizona is getting ready for the "snowbirds", doctors are taking vacations, etc., and she still hasn't been able to see an orthopedic surgeon (they want her to see one that specializes in elbows). IF she has to have surgery, they told her it would be "when they could squeeze her into the schedule". Her advice, don't f***ing retire to Arizona!!!

Therefore, she won't be able to post, answer PM's e-mails, etc... She's having a LOT of trouble with trying to type.

If you want her address, PM me and I'll send it to you . . . . .

In the meantime, though, she needs lots of hugs and prayers sent her way . . . .


Love & Hugs to all,
Lynne