update: Long

[Crankin]

What he said was, "There is nothing wrong." No swollen lymph nodes, nothing he could feel, see, or hear. He did talk to me for about 30 minutes; a very nice older man (well, older than me) who is a cyclist. He gave me the name of an internist at Brigham and Woman's in Boston, who is like MD to the rich and famous. He knows him socially and said I wouldn't be able to see him, but maybe someone in his group. I don't know if I want to go any further with this, I mean every part of my body has been tested, except my heart and lungs, which I can discuss with my primary care doctor. The acupuncture actually seems to be helping some of the muscular things.
When I got home, I was so pissed I told my husband I had to get outside and do something, so we went snow shoeing. The conditions were not great as I suspected and it actually made it harder. Then we went and had coffee and scones.
I see the rheumo for a follow up next week and my primary care doc the week after, so I guess I will think about what I will do next between now and then.

Thanks, everyone.

[KnottedYet]

I know you have been cleared of celiac (which is a darn good thing!), but up to 70% of folks with fibro find their symptoms lessen on a gluten-free diet. Is it something you might consider trying for 2 or 3 weeks, just to see if it works for you?

That might help fill the time until your next doc appts. (lots of gluten-free food info on the internet)

(I brought up fibro to one of my superiors in the clinic today, and he mentioned how fibro and celiac seem to be tied together somehow. So I did some literature searches during my lunch break, and the linkages are pretty fierce. They are NOT the same disease with the same chemical and immunological markers, but both respond to gluten in the diet. Celiac 100%, and fibro about 70% in fibro patients with gut issues and about 30% in fibro patients with no gut issues at all.)

[Crankin]

Interesting, Knot. I sort of believe what you are saying. My GI issues have always been around, since my early twenties. Before I got the results of the celiac test, I actually went to the health food store and bought some of the products (bread, cereal). Both were gruesome to eat. I have been trying to eat higher protein and have pretty much cut out caffeine, which believe me, was a sacrifice. It seems like I have been actually craving carbs, although I don't eat the bad kind very often and haven't for a long time.
Thanks for the info.

Robyn

[KnottedYet]

Yeah, I tried gluten-free bread about 15 years ago, and it was exactly as you describe: GRUESOME!!!

I've not tried it again since! I do rice cakes or corn tortillas instead of bread, and use some pretty good mixes for pizza crust and biscuits and cookies and such. I might try making a batter-bread one of these days, but I'm still grossed out by the memory of the tapioca and rice breads I tried.

Tic Tacs let me down recently. Darn hidden grain products! Kept getting sick but couldn't figure out why. Maltodextrin in the Tic Tacs seems to be the culprit.

I can give up Tic Tacs, but I could never give up caffiene! You are a stronger woman than I...

[Crankin]

Well, I broke down this afternoon and had a coffee with half real coffee and half decaf. I went to bed late last night and was feeling the 3 o'clock slump, so after we went to the library, stocked up on sand for our driveway, we hit the coffee place in Concord Center. Some things I cannot completely give up!!

[EBD]

I know this is late but I wanted to second the suggestion of a link to gluten in the diet. My cousin has fibro and she has had a lot of success with nutritional changes. She saw a nutritionist in NYC with fibro-specific experience. I don't remember the details but I'm pretty sure she started avoiding gluten and sugar, and increased her intake of "good" fats (nuts, fish etc.). Also she installed a fancy water purifier, but who knows what that really did. She was pretty sick for a while, but rarely even mentions symptoms now. And has done two half-Irons!

Good luck, I really hope that you can find out what it is that's ticking your body off, and get rid of it!

[Crankin]

I am going to TRY to avoid gluten and sugar. Can't say I will be able to do it all; the sugar will be easier though. But I crave whole wheat bread. grains, etc. Give up whole wheat bagels???? This will be hard for me. I already eat the "good fats" and have upped my protein. Can't have my Clif Bar??? No matzah at Passover?

Advice, please....