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Newly Diagnosed


mcoop911

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mcoop911 Newbie

I was just diagnosed last week with celiac disease. After 3 years of extensive invasive testing and 2 dreadful hospitalizations I found a newly trained colo-rectal physician who was willing to see me without a PCP (primary care physician) referral.

In less than 5 minutes of listening to my history he said the blood work would provide additional documentation for celiac disease. The labs were positive. His nurse called me with the news and told me "to stay away from wheat, rye and barley" and that she would send me a packet of info which amounted to 5 pages of very basic general info.

I need help with learning about safe products like vinegar, soy sauce, condiments, pickles for now. My goal is to severly limit my choices right now until better contol.

Im grateful for this site. Thanks.


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aikiducky Apprentice

Welcome!

Sounds like you found a really good doctor. :)

Your idea of keeping your diet very simple for now is a good one, plain unprocessed stuff is also the most nutricious and your body can use all the good stuff right now.

This board is a good place for information, also if you have a look at the parent site celiac.com there are safe and forbidden ingredients lists. And one of the members, Nini, has a newbie kit, you can find it from the bottom of her signature.

Pauliina

Ursa Major Collaborator

Hi, and welcome to this board. Good for you for finding us so fast. Your best bet right now is to stick with naturally gluten-free food like meat, eggs, veggies and fruit, until you get the hang of the diet. Plus, while your intestines are healing, simple food is best anyway.

Check out Nini's 'newbie survival kit' on her website, and download it to your computer it will give you invaluable information. Scroll down to the bottom of the page to find the links. Open Original Shared Link

I hope you feel better soon, now that you're gluten-free.

happygirl Collaborator

mcoop911,

wow, i am happy you finally found a doctor who could help.

here is some info for you, based on what you wrote:

1st: check out this link: https://www.celiac.com/st_main.html?p_catid=12

vinegar (see the link above)---distilled vinegar is safe. Malt vinegar is NOT gluten-free. Nor is apple cider FLAVORED vinegar. But apple cider vinegar IS safe. https://www.celiac.com/st_prod.html?p_prodi...-28106553381.12 (this will help you, as many condiments are safe)

soy sauce---soy itself is safe, but often, soy sauce can have wheat as an ingredient. Some of La Choy's soy sauce is safe. San-J (a specialty brand) makes a gluten free version-that was my favorite.

Other things:

my favorite gluten free pasta is tinkyada (rice based). LOVE IT and we have served it to other guests and they didn't know.

Let us know what else we can do! Welcome to the board. Use this forum and celiac.com (the parent site to this forum)---there are SO many resources. I also highly recommend the book "Celiac Disease: A hidden epidemic" published this year by a Celiac expert at Columbia Univ. I wish I had it when I was dx.

There are no stupid questions---ask away----but be prepared for very honest answers :)

Laura

mcoop911 Newbie
Welcome!

Sounds like you found a really good doctor. :)

Your idea of keeping your diet very simple for now is a good one, plain unprocessed stuff is also the most nutricious and your body can use all the good stuff right now.

This board is a good place for information, also if you have a look at the parent site celiac.com there are safe and forbidden ingredients lists. And one of the members, Nini, has a newbie kit, you can find it from the bottom of her signature.

Pauliina

Pauliina,

Thanks for the newbie kit! I have spent the last week on this site learning so much. Is it common for celiacs to have low Vitamin D levels?

I'm a chemist by training and had absolutely no idea how complex the diet issues are - especially for someone who loves to cook.

Guest nini

Welcome, I'm glad the other posters already directed you to the newbie kit, it's just a collection of files I wish I'd had when I was first diagnosed.

I agree that keeping it simple at first is your best bet. Stick with foods that are naturally gluten-free and then after a while you can slowly try one or two gluten-free substitute procucts to increase your menu selections but don't rely on them as staples.

aikiducky Apprentice
Is it common for celiacs to have low Vitamin D levels?

Well it makes sense really when you think that your intestines haven't been able to absorb nutrients properly, possibly for a very long time. I've heard people mention low vit. D here before.

Youre lucky to love to cook - that's aboslutely the easiest way to make sure your food is gluten free! :D

Pauliina


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kbtoyssni Contributor

Welcome! Vlasic pickles are gluten-free (and so are Milwaukee's because they're owned by Vlasic). Most pickles are gluten-free, you just have to call the company and confirm.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
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    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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