Recently Diagnosed

[kkrell]

Hi- I found out last week that I have Celic Disease. For almost 7 years numerous doctors have not been able to find anything wrong with me and one specialist even went so far as to tell my parents that maybe I was making this up. I am relived to discover that I actually have something and I am just being the process of trying to go gluten free. I have checked hundreds of website and some to have discrepancies and what you can and can't eat. If there a list that you can buy or something that tells you what to avoid? For instance one website says balsamic vingear is ok and another says that it isn't. There is just so much information that I don't know where to start. I can say this much...I have been gluten free for 3 days and I already feel better.

Another question...how long does it take for the bloating to go away? Also, I was diagnosed based upon my blood work, is that enough? Will they have to do a biopse of the intestines and if they do does it hurt? Any advice or suggestions would be greatly appreciated. Thank you!!!

[KaitiUSA]

https://www.celiac.com/st_main.html?p_catid=12

Here is a link to safe and forbidden ingredients for celiacs.

Alot of sites have information but alot of them are old and outdated so that may be one of many reasons for conflicting info.

If you go to the product section here there is section about the Delphi product list. This is a must get! It has great info., is 79 pages long, and free

The time that symptoms go away varies among person to person. It took me 3 months for my symptoms to get alot better then a few more to get back to normal. Some peoples go away quicker then that and others it takes longer.

A blood test is good enough for a diagnosis. There are certain blood tests that are very specific and the false positive rate is extremely low. For alot of doctors a blood test will be proof enough for a diagnosis.

I was diagnosed by blood tests and I also carry a main gene for celiac.

Some doctors want to do a biopsy to see about damage and will not give a diagnosis without a biopsy. The only problem is that if it comes back negative that does not mean you do not have celiac, that just means you may have no damage yet or sporadic damage that they missed. I guess they can be good to figure out how much, if any, damage you may have. I did not have one done but some people on here have and of what I hear it's a simple procedure but they can fill you in more on that.

This is a great site for info..its a big change but its not as overwhelming as it may seem.

Things like lipstick and other things you put on your face,head,and hands should be checked because they have a high chance of getting into your mouth. You will find great info about everything on here. Don't hesitate to ask questions on here and you can always email me or contact me if you need anything as well.

Good luck

[Guest jhmom]

Hi kkrell and welcome to the board. Being dx by blood work should be enough for most docs but some still want the biopsy I was dx almost 2 years ago, at first it seemed very overwhelming but it was worth all the trouble, hang in there it does get better! I would suggest at first you stick to fresh meat, fruits, veggies and items you KNOW are gluten-free (clearly marked) until you get the hang of reading labels, etc.

Here are some helpful links:

Safe and forbidden ingredients and food list

Mainstream Gluten free product list

Open Original Shared Link

[celiac3270]

Welcome!

Delphi Forums List

If you PM or post your e-mail address, I'll send you a 79 page word document of gluten-free products in the US. If you'd rather download it from the site itself, since I realize that in this day, you might not want to download a file sent from someone you don't know, follow these steps:

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

I think this is the best list.

Sholland Lists

There are two other lists, also, for foods and medications. These aren't always 100% accurate, though, so be careful

Open Original Shared Link

Open Original Shared Link

Gluten Free Drugs

This is the best medication list for the US:

Open Original Shared Link

CSA Product Listing

I don't really recommend it because you have to pay for it and there are already some great lists that are free, but:

Open Original Shared Link

Clan Thompson Booklets

Pretty cheap, quite good--but the Delphi list is free and better:

Open Original Shared Link

And the following companies clearly list gluten: in other words, wheat won't be hidden under an ambiguous name like "natural flavors" or "food starch"

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

[celiac3270]

LOL, we all posted within three minutes of each other

[printmaker81]

Hi,

I was just diagnosed too, on the same day you posted. I'm feeling just as lost as you are in a world where everything seems to be laden with something that will make me sick. However, I did read a good book that not only helped me feel better about my new lifestyle but also had tons of good suggestions and even lists of good products, companies and restaraunts. It's called The Gluten-Free Bible by Jax Lowell. I think it had been previously published in a somewhat shorter form called Against the Grain. It was pretty straight forward and an easy-read.

Good luck!

[celiac3270]

Open Original Shared Link

I would not urge you to read or buy the Gluten Free Bible or Against the Grain (see above thread).

I would recommend Wheat-Free, Worry-Free by Danna Korn or Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case