Newly Diagnosed And Confused

[daydrmer03]

I was diagnosed with Celiac after having a very positive biopsy result. After being gluten-free and lactose free for 2 months, I had blood work that was negative. However, my gastroenterologist continues to diagnose me as celiac. I dont have a lot of support in my area of South Carolina. I have been reading where you guys are using gluten-free makeup and can't lick stamps.... I need help! Where do I go to find out exactly what I cannot use! I am okay with the food part. Also, have any of you been diagnosed as celiac with only a positive biopsy? One other thing.. I was told I couldn't have distilled vinegar but Heinz ketsup is on one of the gluten-free lists that I have but it has distilled vinegar in it! Help, Please please please - I am so confused!! Thanks so much!!!

Shawna in SC

[lovegrov]

There's so much for you to know. To me, a positive biopsy means you absolutely have celiac. The bloodwork is negative because you've been gluten-free for two months. Once you have celiac, you have it for life.

Distilled vinegar, according to most scientists and dieticians associations, is actually always gluten-free because of the distilling process. Some donb't believe this but the fact is that almost no vinegagr is made from wheat. In any case, Heinz distilled vinegar is made from corn and therefore definitely gluten-free.

Here are some sites where you can find info. Be prepared to do some reading and keep asking specific questions when you get confused.

At this site are two lists of safe and forbidden ingredients. Note that at the bottom of the forbidden list they discuss how some of these ingredeints are actually usually OK but you have to check.

www.celiac.com -- scroll down til you find the lists.

At this next site scroll down until you find the long list of folders with specific topics. Among the topics is a list of companies that will clearly list gluten and a long list of places you might find gluten or contamination, including stamps and cosmetics. You can also join a discussion list there if you want.

Open Original Shared Link

This is the site for the St. John's listserv. You can sign up and receive e-mails, or you can just click on the archives and either start reading or search for particular items.

Open Original Shared Link

Lots of reading but well worth it.

richard

[daydrmer03]

Thanks so much for those links! I am ready to learn!

Shawna