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Newly Diagnosed And Confused
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:blink: 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

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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.

http://tinyurl.com/32w4k

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.

http://maelstrom.stjohns.edu/archives/celiac.html

Lots of reading but well worth it.

richard

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

Shawna

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    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
    • I have also reacted to various Planters products, believing them to be safe because gluten is not listed in the allergens but have had almost identical reactions to yours.  It did not occur to me that I might be getting zapped from them until just recently when I ate some of their Salt and Vinegar almonds and became really ill and then recognized that I had reacted to them before. I have notice in the past few months that the 'Hermans' brand nuts, which have never mentioned wheat in their allergens now carries the 'processed in a plant that processes wheat' disclaimer.  It makes me wonder if all nuts are processed in the same manner and if all nuts and nut products should be considered unsafe? I know that I will not trust the Planters brand any longer regardless of whether wheat is listed or not.
    • I've heard some people say that they're gluten free, and some say they're not.. I had a container of planter's cashews that I ate a few days ago and I haven't been feeling that great since then. I thought I was fine, but yesterday I woke up with a headache and was feeling really gassy all day. Then since last night, every once in a while I'll have some stomach cramps. They last for a few minutes and then go away.. that has happened 3 or 4 times since last night. It seems weird that I wouldn't have a reaction right away though.. or at least within a few hours of eating them. I ate some on thursday and on friday, and I didn't really start to feel sick until saturday. It's been a while since I last got glutened though, so maybe my reaction has changed? Or maybe I'm being paranoid and I just ate too many cashews haha. But that's the only thing I've eaten in the past like 2 weeks that was different. Has anyone else had a problem with planter's nuts?
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