In this thread I best enjoyed the posts by Burdee, Scoutfinch and Tiffany.
I greatly enjoy and appreciate the spread of views I get here.
I remember with gratitude my first days posting here when I was extremely angry at the disconnect between what the doctor, a good book I read by Karen Brody, some of yourselves, and our national support group were saying. You were all terrifically good with me and patiently helped me through some of the many, many issues.
Let me add to this list of circumstances:
- people whose doctors are confused or ignorant
- people whose support groups are confused or ignorant
We are all such different personalities, for some types of people confusion needs a heck of a lot of working through when it's catching.
A friend of mine gave a lecture (with a sense of humour) on Thursday describing people as each having their own "fruit salad" and then again as having the "burger with" or without the various extras in life. As "cat people" and "dog people" and "having fleas" (issues). I'm a cat person by the way. With a veritable macedoine plus plenty of fleas. I also seem to fit almost every personality profile that occupies space in text books.
We don't see each other, we don't know why each chooses the words to post or what part of the reality they reflect, what the words mean.
I'm glad of the expression "infringement" that occurs in a book by a young person I know and refers to him and his younger brothers trying to keep to their new diet.
I also like (a little less) the word "non-compliance" which I heard in a conference. That was put down to when doctors don't give the patients proper information and especially don't tell them about a support group.
In the UK there is a practice of not expecting people to join a support group until after diagnosis which clearly deprives them of sources of information to guide them through proper diagnosis as well as the chance to do homework about the diet.
I explored many of the foods I now rely on, simply for variety, years ago, what shops they were to be got from etc.
I'm a slow learner and I accept that about myself.
My doctor is not going to diagnose me with celiac disease but with Gluten Sensitivity. No way can the gluten challenge be done to me. This has been decided and you remember when I was agonising - agonising over that. I'm now at peace - uneasy peace.
If a doctor is going "I can't" for a couple of years and he didn't even know he should send one for a biopsy at the right time, and if no-one else is speaking to me about any of this at all, no wonder I get confused (also in the light of my nervous constitution).
There is to me an alarming tendency of some of your doctors to want you to go on a gluten challenge after being gluten-free a long time, I want you to have the same solution as I now have (in the last couple of weeks) but I'd better not interfere, I'd better just say what worked for me (so far).
What worked for each person is widely different, there are some who are self-diagnosed and aren't going to see a doctor, some who are only off wheat, some who are off a very big list of things, etc. Quite a lot who are still ill after a long time which is sad but it's good to know (paradoxically).
If we all helped each other a little bit, no matter what mood we were in, that's good. If that's venting that's good too. If that's being sceptical that's good but expect people to come back and help like they did me.
We're thousands of miles from each other, it's slightly safer than within arm's reach - like we all keep saying there are people we just have to avoid.
There are very deep and relevant questions about what is a doctor - in the US and in the UK where it is a different animal effectively ...
I thank God you're all here, bless you all ...
I have pinned to the shelf above the computer the following quote - quoting myself, the words came straight out of me about two months ago:
ANGER AND DENIAL
I don't believe it
I don't want to treat it
I don't want to control it
I hate it!
Already the last three lines have changed, I force myself to cook every day and freeze/thaw raw or cooked foods and have begun to love myself for doing that, but believe ... I still think I'm going to blink and get back to normality ...
On my kitchen shelf are tapioca pearls the normal size, and ones about ten times the size (thought of them when you were all on about stoning someone
!) Do I just cook them for longer or what? Am working up to treating myself with a nice tapioca milk pudding (sorry you non-milk eaters).