Introducing myself

Polly · Post by **Polly** » Sun Mar 20, 2011 8:25 am

Sara!

If any doctor will do, I would be happy to order the tests for you. I am a licensed physician in MD.

Hugs,

Polly

MBombardier · Post by **MBombardier** » Sun Mar 20, 2011 1:01 pm

Thank you, Sara!

I will take all the cooking enjoyment you can send me. I think it is my innate rebellion that I have struggled with all my life. My mother was also an excellent seamstress, and knitter. I can't knit worth a darn (pun, haha) and my sewing skills are minimal.

I look forward to trying recipes you may develop and add to Dee's Kitchen. One of the things I appreciate about this board is Dee's Kitchen. The gluten-free recipes found all over the internet don't always work. I tell friends starting to cook gluten-free to only trust recipes recommended by people they know.

sarkin · Post by **sarkin** » Mon Mar 21, 2011 3:30 pm

Polly, I wonder, too, about the miscarriages (a cousin of mine had a couple recently - I don't think there's really anything advice-y to say to her, and in fact I think I got my gluten sensitivity from the other side of my family...)

Maybe autoimmune; maybe subtle imbalances caused by malabsorption, which could start out affecting things before major symptoms appear... Maybe just inflammation in the body. It is interesting that at least 3 of us just in this recent discussion have had this experience.

Marliss, I'll definitely put my turkey pot roast recipe in Dee's kitchen soon. I'm not much of a baker, but I do love the savory stuff, and am a big fan of recipes that are flexible and not super-fussy about oddball ingredients, amounts, timing (or almost anything else).

Sara

sarkin · Post by **sarkin** » Mon Mar 21, 2011 3:35 pm

Ant, thanks for the welcome - I love your idea about a "can have" and "can't have" list. I think that would help me, even if I never show it to a chef! And I bet my husband will find it useful, instead of having to remember what may turn out to be a shifting list, by the time I get things sorted out.

I went to a friend's big open house yesterday. There was very little I was sure I could eat, so I just made a point to show up without a raging appetite, and ate what I was confident about. A friend of mine rolled her eyes when I said 'no thanks' to the red velvet cake, but truthfully, I've never been a big cake lover, and never cared for red velvet cake at all... nonetheless, it's funny how this holds up a mirror to other people's food 'issues'!

I didn't say anything, but am reminded of what someone once told me: No is a complete sentence. And "No, thank you" is even a well-mannered complete sentence.

Sara

sarkin · Post by **sarkin** » Mon Mar 21, 2011 3:37 pm

Polly, thank you SO much - I will make sure I understand the rules, and then PM you about ordering the tests. I don't want to be asking Enterolab to do something that they can't or shouldn't. Your thoughtfulness will save me weeks, I am sure.

Thank you again!

Sara

nancyl · Post by **nancyl** » Mon Mar 21, 2011 6:14 pm

Hi Sara,
Welcome, and like others have said, it's too bad that we all have to meet in this manner, but we are so lucky to have this forum. So many great people and so much help.

I read your post to the end and you certainly held my interest. You have had your ups and downs. I think my MC probably started many years ago too, but not that bad and I had no idea that it could be that. On a few occasions, I would get hit with stomach aches, frequent BM's that would last a few days, then go away. I am only now putting it all together. I got my diagnosis last November. I am now in my 8th month.

I will be looking forward to your next post.

Nancy

sarkin · Post by **sarkin** » Mon Mar 21, 2011 9:10 pm

Nancy,

Nice to "meet" you - and I'm very interested that there are a few of us with on-and-off stories of this. I have two neighbors who I suspect may have a similar issue - one was actually Dx w/Crohn's 10 years ago, and last year told she doesn't have that (or anything else). And another kind of knows "it's probably gluten (and dairy" but she thinks it's fat. I actually said, "you don't want me to tell you that MC could give you problems absorbing fat, right?" And the answer is - not right now.

I know I'm probably seeing gluten intolerance the way some people see ghosts and conspiracy theories at this point!

I am really glad to have found this group. I'm glad you got here, too. I think when you have up-and-down or unclear symptoms, practitioners are also less clear. (Obviously, with a true peanut allergy, the reaction is so drastic and life-threatening, no one would argue or say anything but "never eat that again.") Having my symptoms go away made it possible to ignore the whole issue, since I knew nothing about it, and wasn't motivated to seek more until a dramatic flare got my attention. I wonder whether there were more subtle signs and signals even years before (which, probably, I paid no mind.)

Best,
Sara

Post by **tex** » Mon Mar 21, 2011 10:12 pm

Sara,

I'm also intrigued by what must go through the minds of people who seem to feel that by refusing to acknowledge that they have a disease, it somehow won't affect them.

What are they thinking?

Neurological symptoms of gluten sensitivity often precede GI symptoms, for some people, and for a few individuals, clinical symptoms never develop past neurological issues, (never progressing to GI symptoms). I apparently was accumulating neurological damage before my GI symptoms presented, because my neurological symptoms were significant enough that a couple of years ago, I was diagnosed with Parkinson's disease, (by a neurologist). I couldn't convince him that my peripheral neuropathy symptoms, balance issues, gait issues, etc., were due to gluten damage.

You guessed it - last year, I was able to convincingly demonstrate to another neurologist why I do not have Parkinson's disease, and so she "undiagnosed" me.

Unfortunately, though, rather than to concede that the neurological damage might be due to gluten-sensitivity, she preferred to not attribute my symptoms to any known cause.

Apparently, few neurologists in this country are aware of the gluten connection, and so they deny it's existence, just as celiac docs have long denied the existence of non-celiac gluten-sensitivity, (N-CG-S). Of course, they are being forced to change their opinion, now, since recent research proves that N-CG-S does indeed exist.

Tex

ant · Post by **ant** » Tue Mar 22, 2011 6:16 am

Tex said

I'm also intrigued by what must go through the minds of people who seem to feel that by refusing to acknowledge that they have a disease, it somehow won't affect them. shrug What are they thinking? Laughing

Well..... they are thinking that their docs are right and its.... "all in their minds"..... Their denial is thus reinforced by the "authority figure"..... or am I not seeing straight?....

Best ant

sarkin · Post by **sarkin** » Tue Mar 22, 2011 9:35 am

Tex,

I guess I can understand why someone might fall into wishful denial - especially if a doctor is assuring them that "they don't have celiac" and so gluten must not be a problem. But I can't understand why anyone who's symptomatic with MC wouldn't jump at the chance to at least try - and not just GF, but a pretty careful investigation into food intolerances. I mean, so many people are on some kind of "diet" anyway!

I think you're onto something there, Ant - a have a friend who rolled her eyes when I switched my supplements (more D, less calcium...), and then her doctor told her to do exactly the same thing, and she brought me the article he gave her... hello, did she think I *didn't* read an article, but just made it up? Yes, that is what she thought. She was trying to get me to switch my plan, which she never listened to, for the program her doctor recommended. Even after I told her that I was doing precisely those recommendations, she still somehow believed that I had thrown darts at a bunch of supplements, and was taking the "right" ones by coincidence.

Unfortunately most practitioners are far behind the knowledge curve (and so many of them aren't especially open to those of us who read sciencedaily.com)!

I used to say "idiopathic" doesn't mean there *is* no cause. It may just mean the idiots haven't figured the cause out!

And I would like to note here, since I woke up a little pedantic this morning, that "idios" is Greek for private, personal, separate (makes sense when you think about "idiosyncratic," right?). So in fact, it isn't even a good word to express the idea of a condition or symptom "of unknown cause." We have a perfectly good OTHER word from the Greeks, "agnogenic" which means precisely 'of unknown cause' - so it looks to me like the barking-up-the-wrong-tree here goes way back and is probably iatrogenic and/or nosocomial in origin ;)

Those last two are words (doctor-caused and hospital-acquired - forgive me if you already knew that) I like to keep in my toolkit. I try to remember to use them with doctors (for example, to discuss the recurrent C. diff. infections that almost killed my mother... oh wait, I'm shifting from pedantic to outraged a little early in the day).

OK, while I'm a little outraged: The doctor who explained my father's autopsy mentioned his megalocardia, and I said "but he always had an enlarged heart" (Tex - I have some pondering on that topic that I owe you). He asked, "are you in the medical profession?" And I said no. And then I asked, "did you not intend me to understand that?" Yes, I did say that. And yes, I believe that's what is often intended, not consciously on the part of an individual doctor, but via their training. After all, if we patients have a better understanding, we're likely to do actual thinking, since we're the ones suffering (that is, what 'patient' means!). And they are *not* thinking, so much as following a prescribed flow-chart - it's the nature of differential diagnostics. What a waste of a bunch of smart people who were pretty good at science.

And that does not exhaust my stories of medical professionals condescending to me when Greek is involved, ladies and gentlemen - and as you will have gathered, I majored in Greek. One doctor actually told me that not to worry about what 'pityriasis rosea' means, it's just a long Greek word. (He had made me come in, on an emergency basis, when I called to make an appointment about a rash... and when I got there, he told me it wasn't measles, which I could have told him on the phone - there had been a local outbreak.) Then he told me I could never get it again, because I'd be immune to it. But I had had pityriasis rosea before, so either he was wrong about the Dx, or he was wrong that having once it would confer immunity. So he learned something at that visit (no measles here!), and I got no helpful info. But he got paid, and I lost hours of work. What a world.

I am SO sorry I went off on this long tangent. I'll try to be a little more on-topic and less rant-ish (except for times when I wander over to a more appropriate forum for ranting), and I'll go back to my word-nerd cave now.

Tex - good news that you don't have Parkinson's, though I realize you still have the neurological issues you *do* have. Thankfully, whether or not your doctors ever get clued up, you know what to do to stop further damage, and have been doing it successfully for some time. And I congratulate you for your persistent and diligent efforts to keep thinking this through, and thank you for sharing your thoughts here.

Sara