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Newly Diagnosed Adult

ShelleyW

By ShelleyW
in Coping with Celiac Disease

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ShelleyW Newbie
ShelleyW
Posted

I was justed diagnosed with moderate to severe celiac. I am very surprised as I have very few of the common symptoms. Like everyone I am on the internet looking for suggestions and answers.

Since this is all a surprise and a bit overwhelming...Right now, I just want a list of the common hidden ingredients that I should be watching out for.

thanx shelley

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psawyer Proficient
psawyer
Posted

Hi, Shelley, and welcome to the board.

This post by happygirl has good information:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

zero Newbie
zero
Posted

Sorry to hear your a member of the club :rolleyes: . I would highly recommend the book "Celiac Disease: A Hidden Epidemic" by Green and Jones.

I never had a direct reaction to eating gluten before my diagnosis but I glutened myself accidentally after being gluten free for a few weeks and was surprised to have a reaction. It was actually quite satisfying (the first time at least) as it confirmed to me that there wasn't a mistake in the diagnosis.

ShelleyW Newbie
ShelleyW
Posted
  • Author

Hi, Shelley, and welcome to the board.

Thank you for the info. Do you have a list of all the abbreviations that everyone is using in their emails? Like the diagnosis abbreviations and such.

Thanx shelley

ShelleyW Newbie
ShelleyW
Posted
  • Author
Sorry to hear your a member of the club :rolleyes: . I would highly recommend the book "Celiac Disease: A Hidden Epidemic" by Green and Jones.

I never had a direct reaction to eating gluten before my diagnosis but I glutened myself accidentally after being gluten free for a few weeks and was surprised to have a reaction. It was actually quite satisfying (the first time at least) as it confirmed to me that there wasn't a mistake in the diagnosis.

Zero,

If you had no direct reactions to gluten, how and why did you get tested? I also am a-symptomatic, or at least I thought I was. I am learning that some of my stomach aches may have been gluten related. I got tested because of chronically elevated PTH, resulting in chronically low Vit D...the endocrinologist finally thought that malabsorption may be my problem...hence the celiac disease diagnosis. Thanx shelley

zero Newbie
zero
Posted
Zero,

If you had no direct reactions to gluten, how and why did you get tested? I also am a-symptomatic, or at least I thought I was. I am learning that some of my stomach aches may have been gluten related. I got tested because of chronically elevated PTH, resulting in chronically low Vit D...the endocrinologist finally thought that malabsorption may be my problem...hence the celiac disease diagnosis. Thanx shelley

I was sent to a gastroenterologist for a colonoscopy. I mentioned that I sometimes had diarrhea after eating a salad which I figured was a developing allergy to some type of vegetable. He did a celiac blood test which came back positive which of course I thought was a mistake as I almost lived on bread but never had a problem with it. A biopsy confirmed I had celiac. But in hindsight, I did have symptoms associated with celiac such as weight loss, depression, not feeling well which were never severe enough to see a doctor about. Now I have no problems with salads but small amounts of gluten (large crouton size) will bother me. Some people suffer horribly before being diagnosed so I feel pretty lucky. It's a little bit of a wild ride getting used to this diet but it gets easier.

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