LIVESTRONG: Gluten Free - Celiac Diet Group

by theglutenguy on Apr 4, 2009 at 9:37 am

I hope this advice is helpful:
The first thing you should do is contact a local celiac association chapter (Celiac Sprue Association, Celiac Disease Foundation and the National Foundation for Celiac Awareness are your best starting points).
Then, once you have started to digest all this information, and perhaps joined a local group chapter... or two, you should really check out TheGlutenSolution.com for product information. They provide a great list of safe products and update the information every month with the companies listed on the site. And what's really cool is that if you have several free-of diets like so many do, you can filter by a whole lot of them.
Good luck on your Gluten Free quest!

Edited by theglutenguy, on April 09th, 2009 at 1:08 pm.

by siveambrai on Apr 7, 2009 at 3:41 pm

I would suggest the first thing that you do is go and get officially tested and diagnosed. Try the diet as well and if you start feeling better then good. However, the symptoms of celiac's disease overlap with those of more serious disorders. You want to be sure you know what you have before doing anything too drastic.
Once you go on the diet I would suggest finding some GF blogs on the Internet that will give you product information/resturant info/alternative recipes. Being able to make my own GF snacks helps me to overcome the feelings of loss I have over being on such a limited diet.
After that I would check out the natural foods sections of your local grocers or the natural foods stores in your town. There are a lot of pre-packaged GF foods that are tasty and allow you to substitue for things you needed to give up. Many big chain grocery stores have ramped up their selection of GF foods recently so you won't need to go far out of your way.

by theglutenguy on Apr 9, 2009 at 9:53 am

I do agree with siveambrai about getting tested. You should find out if it really is celiac disease/gluten intolerance by asking your doctor to test you for CD.
With regards to the point about finding gluten free product information on blogs IS EXTREMELY DANGEROUS if you are allergic to gluten. Bloggers do not keep their information updated with the manufacturer. They post product information that may not be accurate. They could have found it on other blogs or forums, other gluten free resources that have outdated information, or maybe did call the manufacturer once upon a time... but that products ingredients/production status may have changed since then.
As for products in stores, yes there are thousands of products labelled gluten free. But what exactly does that mean - especially if you're celiac? The current FDA proposed regulation states that; for a product to be labelled gluten free it must have less than 20 parts per million (ppm) in it. Small amounts of gluten may not show any symptoms of a reaction, but if you are a sensitive celiac then you might be constantly damaging your body - any health professional familiar with CD will tell you that.
Sorry siveambrai, I didn't mean to rain on your parade, but when it comes to health, at least for me, I don't take many chances anymore.
To get the most updated product information about ANY product (labelled gluten free or not) here is what you should do. Call each manufacturer before you buy their product. Ask them if they have gluten free products - if they say yes, then ask them if they are made on shared machinery, shared facility (with dedicated GF machinery), or in a dedicated facility (if on shared machinery, what do they do to make sure there is no gluten residue left on the machines after gluten containing ingredients have been used on it).
The maufacturers have the most updated information... but then again, you have to call dozens of manufacturers before you can complete a single grocery trip.
Fianlly, most people should avoid milk/casein & lactose as well when they start a gluten free diet, because they both affect the villi in the small intestine (the damaged area due to gluten).

by Gwynnanne on May 21, 2009 at 9:07 am

I was just diagnosed about six weeks ago, but have done tons of research already.  One thing that I keep seeing is that if you suspect you are gluten-intolerant or have Celiac Disease you should get tested (as mentioned above.)  However, you should continue to eat your normal gluten filled diet until the testing is done because going GF will begin to reverse the damage and could give a false-negative small-bowel biopsy diagnosis.