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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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    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • DaVinci's Pizza has several gluten-free items great gluten-free pizza (well done suggested) and they don't have anything with gluten that goes in the fryer, so wing and fries are great all salad dressing made in house and gluten-free.  Owners mom has Celiac so they're very empathetic. Cheers. And enjoy. I eat there all the time and have NEVER had an issue. And if someone just touches bread then prepares my food its all over for me 6-8 hrs of reaction for me. Also Jimmy Johns @ 17th and Peachtree Street also great just tellm'to change glove and ask for the paper to be placed on the sandwich board before they make it. Also never had an issue but I have only had the Italian style lettuce wrap. 
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