Hi Idealist~

I wish we hadn't lost contact with so many people who used to post with our group because the collective experience was so broad.

Kim, I do remember bikerblue/Tami has having that longstanding left sided pain, which sent her to the ER a couple of times, and lots of exploratory scopes, etc. And, I also remember when she finally really gave up corn (in addition to gluten), she did finally improve. I think it was a year or two before she improved. I am also trying to remember her other symptoms...I know she could not 'bike' for some time due to her ongoing symptoms/pain.

Al is still around, and hopefully he will share his experience. I'm pretty sure he has tangoed with diverticulitis. He tried a gluten free diet on a can't loose premise in hope that it might help his neuropathy symptoms. Maybe he will have some thoughts for you.

Whether gluten or other food related or not, I think you are probably right that your problems may all come back to the gut. It is the one big picture I have gotten out of hanging in these forums over many years... many neurological and neuromuscular symptoms stem from problems coming back to the gut.

So.. I agree that intestinal health is a good focus while your doctors continue to search for other things. Among the things to be explored are food sensitivities (really... this can be a hidden answer for many symptoms you'd never dream of). Then there is nutritional deficiency which can cause many neurological/ neuromuscular symptoms (which may be related to malabsorption for any number of reasons). And then there is overall gut health... might you have h. pylori? (assuming this has been ruled out by biopsy/ blood tests?) yeast overgrowth? bacterial overgrowth? other parasite?

Have you ever tried seeing an integrative medicine type doctor? If you haven't yet it might be one last avenue to consider. These doctors are usually MD's (I'd look for an MD)...whose training or experience has given them a broader approach. I took my teen daughter to a DAN! doctor several years back when I suspected the gluten and nutritional issues that mainstream doctors were discounting, as well as having tested positive for pyroluria, another controversial condition among mainstream medicine. [as a way shot in the dark, one of the symptoms sometimes listed for pyroluria is left sided pain..but I don't know how it is supposedly related, or if you have any of the other symptoms that would make that testing worthwhile. There is a page on pyroluria in the gluten file if you want to know more.]

An integrative medicine doctor would likely take you down the path of thorough stool analysis (they do much more testing than our mainstream doctors...looking for bacterial imbalances, etc), immunological testing, nutritional testing, and likely food sensitivity testing. It would be best to have a personal recommendation for one of these doctors, but these links might give you a starting place. You could also contact a local Autism group or a local health store for recommendations. Integrative medicine doctors generally do a lot of testing, and will certainly recommend supplements for nutrition and gut health, etc. I am happy we took my daughter to the DAN! doctor (she does not have autism, but the gut and immune system issues were there)... and it was so refreshing to see a doctor light years ahead. (Although to be honest... he was a little too outside the box for me using every alternative treatment one could think of (homeopathy, vibrational medicine, even offered health psyschics~ things I don't absolutely discount, but might feel a little iffy about)... but he also utilized standard blood testing for immune system profile, standard chemistry profiles, etc, ... and looked for all the things I'd been wondering about..without having to even ask him. He definitely knew and understood his biochemistry and how to interpret all the results.

Anyway, I'd travel this road before giving up~

DAN Doctor List

Integrative Medicine Doctors

American College for Advancement in Medicine (ACAM)



I've probably already offered this up~ but in case I didn't~ have you seen the Fibromyalgia page in TGF? http://jccglutenfree.googlepages.com...atiguesyndrome


Cara