Polly - Here's That Endoscopy Report From 5 1/2 Years Ago

[Wendy]

Not to beat a dead horse as they say, but I did have to write one more thing...........Back when I first got sick they had me go to THEIR doctors as well as mine, then when I qualified for the gov't disability I sent in my papers to them, but the gov't department also sent away to all the various doctors that the insurance company sent me to, too. Well, here we have the right to request all the information that the gov't has regarding our file, so I filled out some more papers and sent them off and waited. This is one way for a person to actually find out what your insurance company has also. Well, you better believe I read them over with a fine tooth comb. One of the doctors that THEY sent me to was a phych doctor, and we talked for about 3 hours or so. And after reading what he wrote about me, well I should have been locked up, instead of going home to my children. It was actually funny, because part of my problem was extreme fatigue, and then falling into a sleep/wake type of dreaming, I still do it, and I actually had several witnesses to the fact also. Which of course since I was only seeing that doctor for those 3 hours, he did not do. When I get overtired, sometimes I just cannot wake up, but I will talk to whoever is asking me questions, the only confusing part of it, is for the person awake, because I talk to them from my dream state. THere is actually a name for this type of dreaming too, but I can't remember it right now. The other thing is that I remember talking to the person when I actually do wake up enough to talk. All I know is that I have no control over it when it happens, and I can sleep for several days, feeling my way to go to the washroom, but still not really awake. It is almost like sleep walking, but I remember doing it. Anyway, I talked to him about how I get that way, and with no meds in my body either, and it was something that had never happened to me prior to having Fibro and CFS.
I thought I would get his opinion, and at the time he agreed with me that it was like being in a dream state, or something like sleep walking, only I remembered do ing it.( I remember the name now, there is a clinic for it in the states connected to a university or something, its the Lucidity Clinic)

Well after we had this nice chit chatting session he wrote up 4-5 page report, maybe longer, the most amazing is the description he told them about, he said that I had bouts of serious phycosis (Sp), and that I seen things, and talked to them. He totally changed it around to something that in no way described what was happening to me. Even the people who witnessed me in that state, had a good chuckle, at my expence though.
Then again, perhaps that was the real reason why I was accepted in less then two months to recieve the disability. My family doctor at the time, said she had never had any patient ever get an answer that quick. Mind you, there were allot of other medical reports and stuff in there besides that report, but it just goes to proove that part about them onlly telling you certain things.

Or maybe he thought I might right there break out in a phychotic state and chat him up. LOL

And I had left his office thinking that he was such a nice man too!

Ta Ta

Gentle hugs
Wendy

[tex]

Polly,

I believe you are correct about leaky gut syndrome. As far as I know, LGS only affects the small intestine. I wonder if anyone has ever researched the possibility that the colon might be affected in a related way. You're probably right, that it isn't physiologically possible, since it probably doesn't have the proper plumbing in place, in order to allow that to happen.

Related to that, though, I wonder how stretching the walls of the colon by expanding its diameter, might affect permeability, (if it makes any difference at all). I noted that the CT scans report, indicated that even my distal ileum showed significant dilatation.

Hmmmmm. I forgot that we know someone with a diagnosis of both diseases, so I guess doctors do occasionally check things such as that.

I don't know what to think about the citrus. It's certainly possible that the acid might be the problem. I never could decide if tomatoes were a problem, so I mostly avoided them, but didn't worry about small amounts. Meat is classified as an acid food, and didn't seem to bother me, (except for a slight effect from beef), but tea and colas seemed to cause problems, though not major ones.

Love,
Wayne

[tex]

Hi Carrie,

Yes, I have one of the primary celiac genes, and another gene that predisposes to gluten sensitivity. My HLA-DQ Gene Molecular analyusis is HLA-DQB1*201, 0501.

I have not had any biopsies of the small intestine. The GI should have done that, the first time I went through the clinic, (just as he should have taken biopsy samples during the colonoscopy). Unfortunately, at the time, I didn't know enough about the situation to recognize that he was failing to perform tests that would have provided vital information. We live and learn.

Love,
Wayne

[tex]

Matthew,

I really appreciate your thoughts. You are quite correct. I am indeed requestioning everything, and I'm hoping, (with help from all of you), to come up with some new answers, and some new insights.

True to your skills as a master craftsman, you have hit the nail right square on the head, with your description of creative thinking.

Not only that, but your insight on Dr. Fines testing methods is truly illuminating. It never dawned on me that one might be able to do a "mini-challenge" with a stool test, in place of biopsies and/or blood tests. I'll ask him if he can give me an estimate of how far I would have to go, on a gluten challenge, in order to provide reliable results.

Your thoughts about partially digested food, that has been dumped in the colon to ferment, possibly contributeing to diverticular disease, reminds me that I toyed with that thought a few days ago, and then forgot about it. You may well be right. I have had a lot of fermention episodes. Of course, diverticuosis can lead to fermentation, by itself. One thing is for sure, though, dumping partially digested food into my colon, certainly couldn't do anything to improve the situation.

The last time I got sick, was during the 3-day diet trial, just before the surgery, and the episode was triggered by milk, (at least that is the last test food that I ate before noticing any symptoms). Now milk is someting that celiacs have trouble digesting, if they have damage to the brush border region of the duodenum, and in that event, the milk would be dumped into the colon with the complex sugars still unsplit, where it would ferment. Milk is not something known to initiate an attack of acute diverticulitis, in an otherwise normal system. Therefore, either the attack had already begun before I drank the milk, and I just didn't notice it, or I've still got gluten damage to my small intestine, which prevents the production of sufficient lactase enzyme, thus sending the milk to my colon in an undigested state, which caused a fermentation episode.

Thanks for your creative thinking,
Wayne