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New To Celiac, Help!


robobchik

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robobchik Newbie

My wife was hospitalized with what we thought was Chrones last month, and has since graduated from college and is now off the health insurance dole. I did some research to try and self diagnose her because the steriods weren't working and I stumbled across celiac disease. The blood test alone will costs us over $600, and we're broke (and I do mean REALLY broke college students). All of that to say, we have been on a gluten-free diet for 2 weeks now, (I have decided to go gluten-free with her in support) and she has had no intestinal problems which leads me to believe that we are on to something. So I have a couple of questions: The first is does anyone know of a more sure-fire way of finding out for sure if that's what she has other than following the diet that won't cost us an arm and a leg? And also, I spent about 3 hours in whole foods trying to find things similar to what we eat that won't cost us a fortune, and taste decent, so far we've been eating alot of fruit because that is the only thing we know for sure she can have. I found the list on this site of foods that are safe and foods to stay away from but there seems to be a HUGE gray area of foods that I'm not sure about. Could anyone refer me to some good books, or lists of brand named foods, good substitute stuff, and restaurants (we like to eat out). Thanks. Some of the foods I'd really like to know about are: hummus and dr. pepper.

Robin


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tarnalberry Community Regular

Rather than finding substitutions for things that normally have wheat (which will be expensive), you may want to rely on naturally gluten-free, whole foods.

The key here is that ONLY wheat, barley, rye, and oats have gluten. Packaged/processed foods have lots of ingredients that may be derived from these grains. Whole, natural foods do not. All the fresh produce in the store that isn't a stalk of wheat or a bushel of oats - that's all gluten-free. (So go nuts with apples, bananas, peaches, pears, plums, berries, cauliflower, carrots, lettuce, cabbage, broccoli, cabbage, sweet potatoes, tomatoes, etc... you know where I'm going with this. ;-) ) Same thing holds true with fresh meat that doesn't have anything added to it. Same thing holds true for plain rice and plain beans and plain nuts and plain oils. Those are good safe places to start until you get the hang of reading labels and looking for the more exotic gluten-free items.

As for testing... I'm surprised the blood tests are that expensive, but I suppose paying the lab for the blood draw can be pricey. Keep in mind that the dietary challenge IS a valid test, but if you want medical laboratory tests, she will have to go back on gluten for such testing (the equivalent of 2 to 3 pieces of bread each day for 3 months) in order for the testing to be valid. It may be easier to stay gluten-free until you have the insurance to cover the tests, but it's a tough decision either way.

And while I don't know about Dr. Pepper, store bought hummus you have to read the labels on. I've never put anything containing gluten in my homemade hummus, but anything that you don't make yourself from scratch you need to read the label on. Go to the celiac.com safe/unsafe foods list for a very valuable list to take with you to the store to help you get through reading those food labels.

Jnkmnky Collaborator

Open Original Shared Link

Here is a link that has lots of good answers for you.

Canadian Karen Community Regular

Here's another link that will be of great help to you.

Open Original Shared Link

This list is broken down into convenient categories. It is a godsend for those in the beginning stages of the glutenfree diet.

Cheers!

Karen

nettiebeads Apprentice

You very well be right with the celiac disease. My dr never did have me do the blood work. He figured out the D was very indicative of celiac disease, and going gluten-free stopped the symptoms, therefore it was celiac disease. Why do you need the test? If your wife is better with going gluten-free, then go gluten-free. As far as foods go, vegetables in as close to the natural state is the best way. Lean meats that are high in protein are very important. I don't shop very much at my health food store. I more mexican and oriental meals. Corn tortillas are gluten-free, use gluten-free mixes or make your own for the seasonings, which is mostly chili powder and garlic powder anyhow. All of the stuff can be found at any supermarket. Same with oriental, just be careful of the sauces. But you can get rice noodles at a reasonable price too. And of course rice or corn cakes. The spaghetti and alfredo sauces by Ragu are gluten-free. I just subtitute rice noodles for wheat, or spaghetti squash if using alfredo. There are lots of ways to make an almost regular menu gluten-free. email me if you have any questions or need meal ideas. Oh, and soups can be made gluten-free. and stews. Or chicken pot pie, just use cornstarch for thickening and mashed potatoes for topping or.... I've been doing this for nine years so I know that at the beginning it is overwhelming, but there are (cheap) ways to cope. If you ever want, feel free to email me with questions or menu ideas. Good Luck! We're here for you!

KaitiUSA Enthusiast
Some of the foods I'd really like to know about are: hummus and dr. pepper.

Dr Pepper is gluten free

robobchik Newbie

Thanks for all the replies, I feel better now about things. I think for awhile it will be a day to day struggle.

robin


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    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
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    • Scott Adams
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