September Roll Call

[Marciab]

Hi Al. Good to hear from you. Your writing sounds interesting.

I moved recently and am attending a new gig group. Going to gf meetings has been a real eye opener for me. I'm happy for all those who've discovered how much better they feel gf. I'd love to see people diagnosed sooner.

Tc .. marcia

Ps. Would love to hear from the others.

[Marciab]

Hi Steph.

I'm not much of a facebook person either. I was but stopped because it takes too much time.

Knowing that I'd been glutened was easy when I was eating paleo 99% of the time. I'm trying to get back to it but it's just impossible for me to keep enough paleo foods on hand.

My auto immune symptoms are similar to yours. I don't get diarhea from gluten cc unless I eat waaaay too much at one time. I've only experienced it a few times, 5?, since going gf in 2005. I get a few blistery incredibly itchy bumps on my abdomen and some neuro symptoms like myoclonus, ataxia and facial tics.

It's great that you grow your own food. More people should or at least go to farmer's markets. I can't keep up with plants.

I'll check out the diet in the Fasano paper. Tx.
I'm actually working on getting back on the paleo diet. It's just tough to do right now.

Tc ... x

[GFStephanie]

I agree that it is way too hard for super sensitives. I'm not sure how much of what I do is absolutely necessary. I was so sick so often when I was figuring this stuff out and I haven't had time to recheck everything. Certainly growing your own and buying from farmer's markets is great in season. Trying to get enough canned and frozen for the winter is a lot of effort and not possible for most. There does need to be an easier way than just being sick. I am hoping to be able to find that. For now I am happy to have a found a way to stop being sick so often. I still get large amounts of uncontrollable diarrhea way more often than I'd like. The system is much more geared to making it easier for the average celiac than doing much of anything for the more sensitive ones. I'm tired of people telling us that we are paraniod when we are genuinely sick.

[Marciab]

I think you're definitely on the right track. I'm trying to get back to a grain free / paleoish diet.

I stopped listening to those people who don't understand what being super sensitive is all about. And I found going to support groups that I'm not the only one with this problem.

I don't know if dgl and digest spectrum combined or which one stopped me from being super sensitive but my reactions stopped a few months after I started both.

I'd been paleo since 2008 but cheated about once a month when i ran errands. It was unusual for me to cheat. Now I'm eating rudi's bread daily. Some pancakes made from king arthur pancake mix. And some potato chips. I don't stray from these.

Spectrum has xylanase in it and that breaks down biofilms. It has other important ingredients too

Dgl restores damaged gut.

Have you tried s boulardii for the d ? I use jarrow brand. It works for me everytime. It works on gastritis sometimes too. It's been shown to be effective for c diff but I'm not sure if it takes over or kills it or just stops the d caused by c diff.

Gotta eat. Tc ... marcia

[Marciab]

I don't see an edit feature.

I was going to say that I've been eating gf processed garbage since Jan 2014 and still haven't felt any worse than I did.

I'm not getting my blistery rash or neuro symptoms but I'm getting a different rash that I think is just an allergy. It comes and goes within a few hours.

I'm going back to avoiding gf garbage tho because it's dangerous for me. I'm going to miss it. Lol.

Tc .. marcia

[GFStephanie]

I think that there are a lot more of us out there than people would like to believe. I'm going to look where s boulardii has been shown to help with c. diff, but if you have those studies handly, can you give me references? Thanks for the suggestions. I'm going to look into them. I have noticed a tiny difference with align or b infantis, shown to help with celiac disease and IBS. A noticed a larger difference with digestive enzymes. I think they allowed me to see what was ongoing gluten ingestion and what was diarrhea due to past damage that hadn't healed yet. It seems to take a lot longer to heal that I was thinking. I'm pretty sure I eliminated some thing that I didn't need to because of that. Now I just have to figure out which things.

Nevermind about the references. I found one where it helps with celiac disease in mice: Only registered and activated users can see links., Click Here To Register...

[Marciab]

Hi steph.

I agree with you that there are probably those who are more sensitive than they realize. But having visited the dark side aka eaten gf garbage foods WITHOUT getting a reaction I understand the temptation. Lol.

Some are probably getting reactions they don't recognize as reactions. Or if they recognize them they chose to ignore them. To each his own.

I'm using digestive enzymes too. I couldn't eat real food without these. Glutenease / dpp-iv really seems to help with my gluten cc.

So far I've had my best results from enzymedica brand. I found their spectrum about a year ago and asked a rep if they were sure that the xylanase was ok for people. They use it on livestock. Xylanase breaks up biofilms.

Spectrum has dpp-iv too.

Googling boulardii c diff will show the studies.

Sorry I can't give links from my phone. I gave up my computer a couple of years ago. It was just too much hassle keeping up with updates and security.

I'm currently getting allergic reactions to all probiotics so I'm not sure what to do.

Tc ... marcia