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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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9 posts in this topic

My wife was just diagnosed with celiac disease about a week ago. There's SO much info online, but it's too vast to assimilate. Is there anywhere someone knows of to get a "crash course" on celiac disease? My wife's doctor has not been really helpful - his whole explanation of the issue is that she'll have to stay away from wheat products and watch what she eats.

Are there different levels of celiac disease? Are the treatments the same anyway?

I see that many people with celiac disease get sick from gluten - so it's easy to see that in that case you'd need to be very careful. My wife (thankfully) gets no visible adverse reactions, but it causes her body to be unable to absorb vitamins properly. I wonder if that means she can have glutens occasionally?

HELP!

I'm a concerned and clueless husband!

Yitz Weiss

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First of all I want to say WOW, you are a great husband for helping her with all this. That is great!! She needs your support now and you are doing a great job.

The best way to learn is just jump right in!! This is a good place to start, I have learned the most from message boards.

You are overwhelmed with information right now, but it does get easier. You will learn how to read labels, learn what brands to trust, and what foods are good and not so good. Hang in there.

If your wife has celiac disease then she needs to avoid gluten TOTALLY. There are not levels of celiac disease, but there are levels of villi damage. The villi are the little hair/finger like things in the intestines that help us absorb those nutrients. Once she begins on the diet and avoids gluten the villi can heal and she can begin to start feeling better and getting her vitamins and minerals.

Many people do not have symptoms, just like your wife. Or sometimes they do not have "typical" symptoms. There are over 200 symptoms associated with celiac disease.

Hang in there, things will become easier.

-Jessica :rolleyes:

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If she's celiac, she can't have gluten - period.

It can be a difficult change to make - it's certainly a big one - but there are plenty of ways of making it easier. The easiest way to start - in my opinion, and it's really just an opinion - is to keep out of the processed, pre-packaged foods. They have the additives and ingredients that are questionable. Stick to whole, natural foods that are gluten-free to begin with. That is, get your foods from the produce department (and meat counter, if you eat meat). There's plenty of fruit, vegetables (including starchy vegetables), and meats that will give plenty of fat, carbohydrates (and fiber), protein, and vitamins and minerals.

Then keep up with the reading, and learn about the other items that are gluten-free.

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It's great to see you so supportive.

What has been said I agree with...there are not different levels of celiac ...you have it or you don't . If you have it you must avoid all of gluten.

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

This is the link to this sites safe list and forbidden list for celiacs which might help you as a guideline since she is first starting off. It can be overwhelming at first because there is so much that can contain gluten. It gets easier and you have sites like these that can help if you have any questions. Good luck :D

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This site right here is where I have learned the most about celiac disease. After I fully explored this site, then I took time to look at other sites. celiac disease is an all-or-nothing disease. You either have it, or you don't. The only way to control it is to go completely glutenfree. Keep coming back, ask any questions you have, read, read, read! Your help is something that will be invaluable to her. My hubby and two teens help me read labels. Without them, I would have many more accidents than I do have.

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Dear Yitz,

as the others have said, it DOES get easier in time. There is so much that you can learn just using the internet. Know that now your wife will need to be mindful of other things such as shampoo, lotions, soap...topical preparations. Buy only the gluten-free brands. Also, licking stamps or envelopes should be avoided. Gluten can show up in many kinds of products. In my opinion, it is best to have a gluten free kitchen, otherwise, there will always be the danger of contamination. Things that you don't even think of, like buttering wheat bread, then dipping into a jar of jelly can make a Celiac sick (if she eats the jelly. ) We threw out our toaster and waffle iron, items that couldn't be immersed to be cleaned, and replaced them. An excellent cookbook that is immensely helpful is, "Living Well Without Wheat--The Gluten-Free Gourmet" by Bette Hagman. She is a Celiac, and is perhaps the most respected authority on the gluten-free diet. She has come up with some excellent recipes for baked goods as well as other dishes. She also explains how to avoid "hidden glutens" and describes the characteristics of the various gluten-free flours that are used in our baking. That is a fine start to becoming proficient as a gluten-free cook. My family has always enjoyed my cooking and that has not changed since they took up the gluten-free diet along with me. I am most grateful for their support, as I am sure your wife is for yours! You'll be fine.

Paula

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Welcome Yitz!

When we first deduced that my young son could no longer eat foods with wheat in them, I was totally overwhelmed! When you start reading labels, as your wife will be doing for the rest of her life, it seems wheat is slipped in almost everywhere!

I think the best 3 things I did to get a handle on what foods are safe to feed my son are:

1. Made an appointment with a Nutritionist/Dietician. We were very fortunate that she has a keen interest and knowledge about Celiac disease, and was able to give me so much information to look over and learn from, as well as answering my questions face to face. I think our first meeting was over an hour long, while my husband and I fired question after question at her, that she was able to answer fully and sympathetically. At our second meeting, she even brought a box of cereal as a little gift for our son! She was also able to give me a list of specific stores in our city that carry various gluten free products, as well as sample gluten free menu plans to get us started. She has made herself available via email any time for what ever questions pop up, and this is almost 3 years later!(We love you Ellie!)

2. Get in touch with a Celiac Support Group in your area if one exists. Ellie invited us to a Celiac Support Group meeting in our city, and offered us membership etc. Part of their membership package listed stores and which products you can buy where, ie store A may be best for buying soups at, where as store B is better for GlutenFree Flours. They discussed alerts over products that were once gluten-free but have changed ingredients, discussed travel experiences being gluten-free etc. Very informative and understanding of what your wife and yourself are going through.........they've ALL been there! They also have "meetings" where they get together and learn to cook/bake several gluten free recipes. When you try these things in a group, you pick up ideas you may not come up with on your own, and trying new ways/ingredients in your cooking is not as un-nerving! SO you might want to investigate to see if there is a Celiac Support Group in your area.

3. Visit Celiac.Com regularly!These folks are FULL of information and knowledge surrounding living a gluten free life. They are also a sympathetic ear when you need one, and celebrate your "little" triumphs, when they occur, with you! Come here often and ask as many questions as pop into your mind! Vent about how frustrating it is. Anything you say will be met with kindness and caring!I know this from experience!

So Welcome Yitz :D and may GOD BLESS YOU for being a caring and supportive husband. Remember this new way of eating is absolutely essential for your wife to maintain good health. Without it she is taunting cancer, thyroid disease, diabetes, and an almost endless list of ailments! Be her anchor when she feels like throwing in the towel! She'll need you! ;)

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Welcome Yitz:

I agree with all of the above. Just don't be fooled into believing she can eat gluten once in a while, it does a lot of damage that she may not be able to see or feel now, but years from now it will take a toll on her body. It can cause infertility and many other problems.

Just take it slow and you will learn a lot of information from everyone on this site.

Sally

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Yitz-

This website might help you start out Wheaton gluten-free foodlist. I used it alot when my daughter was first diagnosed. It gives you listings of mainstream and specialty gluten free products. Hope this helps!

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    • I can not help you except to offer some emotional support.  You are not crazy!  You can get glutened on a farm.  Here is a study: http://www.nejm.org/doi/full/10.1056/NEJMc063112#t=article This topic has come up before: Hugs!      
    • I know I got glutened after handling some straw last year helping out decorating at the farmers market then going to eat something without washing my hands. I later learned it was wheat straw, some of them still had the heads on them and everything. Gave that area wide walk around after that, I did not have much issues with inhalation with it. But if your there with a thrasher running, down wind during the harvest.......I imagine it might be hell if your super sensitive. If you get skin reactions that easily from it I guess taking a vacation during harvest? Try staying indoors, dust mask, long sleeves and pants hope for the best.......I am just throwing some ideas out there. Maybe someone can help a bit more.
    • Hi i haven't been diagnosed yet. Bloodwork was negative (on gluten free diet) and I'm awaiting skin biopsy results  I have DH on the front of my thighs. The dermatologist says DH only happens on knees and elbows therefore I don't have it. It's itchy as hell, blisters, purple scans as It heals, migrates around but always in that spot on both legs. It takes 5 days after exposure to gluten for it to show up and it can last for a month. I throw up 24 hours after exposure, GI symptoms 36 hours after that last for about a week. I also will have a panic attack somewhere in that time.  I've been gluten free since December. Rash went away after a week of no gluten but came back after a few months (I ate a rice Crispie square)  My problem is this. I live in a farming community. I just filled my dogs kennel with straw not even THINKING about gluten. This was last week. All symptoms happened in order and now the DH is back. How the hell am I going to survive? I can stop using it on my property but what if it's in the air during Harvest time? I thought I had a mental handle on this but I'm devastated and terrified. My husband doubts it's possible the straw Glutened me but I know it did. What if this summer the air literally kills me? Has anyone dealt with this? I feel like I'm going insane, I'm so obsessed with this and now I'm itchy and sick too 😥 
    • It's good to be aware isn't it. Medical research has verified airborne particles can be problematic and hopefully there will be greater refinement in the research to establish greater understanding over time.  The site manager at the construction site informed me that my symptoms starting coincided with when the work with cement started. As I got sick from plaster in my house I am thinking this could be related. I was honest with my doctor about my symptoms and said I thought it had something to do with working next to a construction site. He said it sounds like an allergice response and said that it could be related to gluten symptoms but that these things are poorly understood.  The cement work nearest my window is finishing this week and I'm due to return to my job. Relief! X 
    • Dairy is definitely the thing to put on hold for a while -  you may eventually like to introduce some hard cheese like cheddar which I could tolerate for months before I went back to drinking milk again. Best to avoid tight waistbands if you can because even four years after diagnosis I find that I still get quite bloated at times and tight belts are painful in a way they never were before. Peppermint tea helps some people if they are suffering from trapped wind. Walking helps too, I find.
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