This patient support community is for discussions relating to Celiac (Sprue) disease, anemia, behavioral changes and neurological issues, bones and osteoporosis, dental issues, diet and nutrition, infertility, gastrointestinal issues, gluten-free recipes, growth issues, infants and children with Celiac, pain management, and skin and dermatology issues.
To my knowledge, there has been little change in the 'treatment' of this condition. A person needs to avoid gluten in any form and for some there can be cross-reactivity to other things, such as casein - the major protein in dairy. A good resource to read about some of this is at enterolab.com, since gluten issues may also be problematic in conditions such as some forms of microscopic colitis - at least in some people.
There are some studies being done on ways to possibly 'block' the problems of gluten, but nothing has been proven yet. And from what I hear from my husband and others with this problem they're not going to take a chance on poisoning their systems unless something is found that will be 100% effective. At this point, the only 100% is staying away from the 'poison,' and it's just not worth it to them to 'test something out.' Getting 'hit' requires weeks for my husband to recover - he doesn't feel it's worth it.
On thing we have found however, is cross-contamination can be a REAL problem especially when it happens as other food products are shipped in the same containers as wheat, rye and barley products. And rice can be contaminated if the 'fortification' process includes a slurry of vitamins that 'stick' to the grains via a solution that contains gluten. The same thing that allows stamps to stick so well to envelopes can do the same thing for rice, unfortunately. We've ended up dealing directly with some farmers in the mid-California area, buying organic sushi rice that we know is 'clean.'
I'm afraid to say the best thing to do is to be very, very vigilent. It takes more time, but it's worth it. I just wish there were more rules and regulations on gluten products. What really irritates me is the government's attitude on labeling. There can be - by law evidently - a very low percentage in some foods of gluten and that's supposedly fine. Well, it's NOT fine. Even the smallest amount is too much! My husband has gotten 'hit' by that until we just decided no more pre-prepared stuff. But even with that caution, he's recently gotten hit with some 'enhanced' meat. It wasn't labeled, and that pisses me off. I'd really love to 'transfer' this lovely problem to every official that thinks a small percentage of gluten is fine, or that there's really no such thing as big problems due to gluten. Just for a single year............that's all I ask. Let them see and experience this misery first-hand. I think it's going to be the only way that some people are going to understand exactly what is going on.
Oh, and I'd LOVE for each doc to experience it! Far too many pass it off as 'nothing.'
Sorry, I'll get off my soapbox now...........................
Thanks for the reply, I agree it is so easy to slip back into it. I have become very sensitive and open to the whole celiac experience. Even though i am not i eat sprouted grains. I also buy products from glutenfree.com I pay a little more in the stores but i feel so much better. Being sick with hep c for 20 plus years i need all the help i can get.
I think there are many illnesses related to gluten. I am still searching and reading as much as poss. Yes the Doctors. It is hard to find a Doctor sympathetic to any problem. Most are over booked with pateints and we are shuttled in and out like cattle. If you have pain you are looked at like a criminal for wanting narcotic relief.Kinda like in schools now where to many kids for the teacher. Both suffer but the kids to a higher degree.
Ok anymore on anything about where to buy or get gluten free products would be much appreciated. Thanks and God Bless
D
And because of the contamination problems with oats, we end up buying them from a farm - they're on the web so anyone can purchase. They're great and so far no problems. I gather growing a non-contaminated product started out as a 4H project and became the family business. But whatever it is, it allowed my husband to have all sorts of oatmeal products again. So a lot of weekends are spent making oatmeal cookies, or cupcakes, or?
We also use a fair amount of soy-based products because he's cross-reactive to casein, so we've had to switch from any diary-based items. I've got a great brand of soy-based ice-cream if you need that. It's good enough that even I pig out on it - LOL!
Thanks for the info. I have used some of Bobs Redmill in the past gluten free and tried my own baking living at 10.000 ft above sea level. Funny thing i kept adding more yeast and the dough just would not rise. Then i read the higher up you go the less you use and after a certain height you just use baking powder and no yeast. Yes the contamination is serious. So the grains and oats are sprouted from the farm? I ran a co-op and got a license for 15 bucks from the state. Gave it a name and as long as i did not sell anything i would not have to pay sales tax. Then i would buy in bulk from big name co. like Rainbow foods and as long as i purchased over 500 dollars worth it was all legit.
Cases of this and cases of that many gluten free stuff. Spelt pretzels and the like. The tractor trailors would have a drop off point close to home and just meet them once every 2 months. Really worked out well. Almost cut the cost in half. That was in Colorado.
What kind of soy ice cream do you guys do ? I do rice dream and soy dream, always open to new types and flavors. What type of oatmeanl products does he do?
I do'nt do any dairy and buy rice cheeses and vanilla rice milk stuff.
Take care and thanks again
Dan
I recently diagnosed myself with either Celiacs Disease or just Gluten intollerance....ether way I KNOW that if I eat something containing this protein I will pay the price. I am like your wife in that fact that my symptoms are big mood swings...almost rage....and I have no patientce at all. It takes me about 2 days to see any type of improvement.
So far all I am eating is gluten free oatmeal and fruit for breakfast, chicken or turkey and a salad for lunch and dinner. I put lemon juice on my salad so I dont use any salad dressing. I also get bad abdominal pains when I have ingested gluten so I have to take a pain pill to help with that as I'm not able to take any OTC pain meds....aint life a bi tch?
About the time I begin to feel sorry for myself I see something on the evening news about a different country and people starving then I think..."I dont have it so bad after all." I guess it could be worse but I sure do miss a big ol' cheese burger and onion rings.
I did see a news report that the next Trillion dollar industry would be organic foods. If I knew how to farm you could bet your azz I would be planting food for sale. Got any good recipies your like to share? Please dont tell anyone I asked that question...I could lose my man card.
Bob's Red Mill not long ago also started selling gluten free oat meal, which I am enjoying.