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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.

Introduction As We Are Newly gluten-free
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12 posts in this topic

Hello everyone,

 

My wife is newly Gluten Free (like less than 2 weeks in) and seems she's not big on Internet Forums I thought I'd join one for help, support, and ideas.  It's already getting very difficult and she wants to quick and just go back to eating wheat and feeling like crap.  She's very frustrated.  Here's a little background on the situation.

 

For many many years my wife has had stomach issues.  We met in 1999 and she had problems then.  In 2001 she underwent an endoscopy & colonoscopy at a top New England hospital (Dartmouth)  but they couldn't find any problems and chocked it up to IBS.  Over the past copule years or so she's been developing other ailments that the doctors can't diagnose.  Finally I was researching Gluten Intolerance and sure enough most of her symptoms were on the list.

 

It came to a head a little over a week ago when she had a pumpernickel bagle and almost instantly turned bright red over her entire body, she said it was tingly and painful.  Luckily we had some benedryl and after about 30 minutes it started going away.

 

The next day she went gluten free and one major problem she's been having cleared up immediatly.  Her feet (particularly the heels) have been killing her but as soon as she cut gluten out the pain went away.  Of course now she's suffering from withdrawels both physically and mentally.  She's Italian and we both grew up lower class in New England so bread and wheat were a HUGE part of our diets, especially hers.

 

So she's having a hard time and even says things that are natually gluten free that she used to like don't taste good anymore.  Most gluten free recipes and meal suggestions we find are fancy and involved instead of quick and simple.  I'm hoping she can stick it out and get through the withdrawels while we try and come up with more gluten-free food she can eat and enjoy.  She's already sick of chili and chicken (the two things we have the most of in our house at the moment)  I'm headed to the store now to get ingredients to make gluten-free corn bread so hopefully that'll help for today.

 

*sigh*  It's definetly tough, and I suffer from anxiety and panic disorder so seeing her depressed/upset really taxes my emotions as well.  Glad to have found a forum like this that seems active and full of other gluten-free people that aren't just doing it because they think it's a Fad.

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I would suggest a celiac blood panel. A formal diagnosis may help your wife stick to the diet. You have to be eating gluten to get accurate results. Go to the University of Chicago's celiac website for lots of information and the proper testing requirements.

Oh, there are plenty of simple good things to eat that are gluten-free! We had salad, pot roast with carrots and potatoes, gravy, and applesauce with fresh strawberries lat night.

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Thanks for the reply.  She also doesn't like red meat so that's one reason meals are a little tougher to think of.  I just went to the store and picked up a loaf of Rudi's gluten-free bread for her to try.  I had some and it wasn't bad.  She tried it and said it has a wierd after taste and she didn't really like it.  This is very frustrating as she's hardly eaten for 2 days and money is always an issue so we can't just keep buying stuff to try.  ugh.  Time for more reading and research.  I think I'm more anxious at this point than she is.

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I just posted this in another part of the forum:

 

"In a 2010 study, only 12 of 32 individuals who said they felt better on a diet that excluded gluten or other wheat proteins actually had an adverse reaction to those molecules. “Thus, about 60 percent of the patients underwent an elimination diet without any real reason,” notes study author Antonio Carroccio of the University of Palermo in Italy."

 

It is very important to get an actual diagnosis before going on an elimination diet. 2001 is a long time ago - she could have developed celiac disease between then and now, but she could also have something completely different going on.

 

The internet is helpful for support and information, but it is dangerous to diagnose yourself or your wife by just searching the web. There is nothing better than real evidence to get someone to buy into a plan of treatment. Your wife is going to have a very hard time fully committing to a gluten free lifestyle without a diagnosis.

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I agree that a test would be best, and maybe that's what we will do but with the insurance we have we'll have to pay for the entire thing out of pocket.  Definetly exploring that option and I'm giong to be checking out the University of Chicago website

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I agree that a test would be best, and maybe that's what we will do but with the insurance we have we'll have to pay for the entire thing out of pocket.  Definetly exploring that option and I'm giong to be checking out the University of Chicago website

Ugh, insurance. Shop around! I found a $1000 difference between gastroenterologists when it came to the endoscopy, and the blood test for celiac is not cheap. But if you can stomach a few hundred bucks to get that done, and it's definitive, the level of confidence is such that she could probably skip the endoscopy. Mine was off the charts, but the doctor wanted to do the endo anyhow to see if I had an ulcer or other issues. Good luck!

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Welcome Jeepfreak and wife!

 

I also strongly suggest having a complete celiac antibody panel.  If your wife has Celiac Disease, her health will only get worse with time.

 

Just an interesting aside...I thought I had an issue with beef, like steak for the last couple decades prior to diagnosis -- turns out I was intolerant of everything else I was eating along with meat.  Once I had removed all sources of gluten...I eat beef regularly and it tastes great now.

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Welcome JeepFreak!

 

Just want to say that I admire and respect you for being so supportive of your wife - especially now as she fights through the withdrawal and the difficulties of changing a lifestyle!  I have always cooked for myself and stick to quick, simple meals and it is actually easy to do gluten-free.  Simple meat, veggies, and a starch (I prefer starchy veggies like squash, potatoes, or yams) make for a tasty, very healthy, and quick meal.  And it is much less expensive than getting the gluten-free bread and pasta replacements (healthier too, IMO).  As your wife gets through the initial withdrawal she'll most likely find that her tastes will change - but once she starts feeling better hopefully she'll realize that it's all worth it.

 

Hang in there and good luck!

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Hello everyone,

 

My wife is newly Gluten Free (like less than 2 weeks in) and seems she's not big on Internet Forums I thought I'd join one for help, support, and ideas.  It's already getting very difficult and she wants to quick and just go back to eating wheat and feeling like crap.  She's very frustrated.  Here's a little background on the situation.

 

For many many years my wife has had stomach issues.  We met in 1999 and she had problems then.  In 2001 she underwent an endoscopy & colonoscopy at a top New England hospital (Dartmouth)  but they couldn't find any problems and chocked it up to IBS.  Over the past copule years or so she's been developing other ailments that the doctors can't diagnose.  Finally I was researching Gluten Intolerance and sure enough most of her symptoms were on the list.

 

It came to a head a little over a week ago when she had a pumpernickel bagle and almost instantly turned bright red over her entire body, she said it was tingly and painful.  Luckily we had some benedryl and after about 30 minutes it started going away.

 

The next day she went gluten free and one major problem she's been having cleared up immediatly.  Her feet (particularly the heels) have been killing her but as soon as she cut gluten out the pain went away.  Of course now she's suffering from withdrawels both physically and mentally.  She's Italian and we both grew up lower class in New England so bread and wheat were a HUGE part of our diets, especially hers.

 

So she's having a hard time and even says things that are natually gluten free that she used to like don't taste good anymore.  Most gluten free recipes and meal suggestions we find are fancy and involved instead of quick and simple.  I'm hoping she can stick it out and get through the withdrawels while we try and come up with more gluten-free food she can eat and enjoy.  She's already sick of chili and chicken (the two things we have the most of in our house at the moment)  I'm headed to the store now to get ingredients to make gluten-free corn bread so hopefully that'll help for today.

 

*sigh*  It's definetly tough, and I suffer from anxiety and panic disorder so seeing her depressed/upset really taxes my emotions as well.  Glad to have found a forum like this that seems active and full of other gluten-free people that aren't just doing it because they think it's a Fad.

The first few weeks are rough and sometimes just knowing you can't have something makes it even worse. It's like our inner teenager SCREAMING!!!

 

Good luck to you and you're awesome for being so supportive!

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Thanks everyone for the tips and the welcome.  Actually things have seemed to have gotten better for her in the past day or 2.  We're finding more things we can cook that she likes and she even tried some Rudi's gluten-free bread and said it was ok for toast or breakfast sandwiches.  Probably gonna have to make our own at some point.  She's sticking to it which is good.  The bummer is that down the line when we can afford the test she'll have to gobble down the gluten and start this all over again.

 

Hoping to learn lots here!

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Welcome Jeepfreak!  (Wave here)

 

Really the healthiest way to go gluten-free is to switch to eating  mostly whole foods.  Forget about the processed foods for a few months and stick with home cooked meals made from veggies, meats, nut, fruit.  You don't even need to eat bread at all.  You can eat rice wraps instead.

 

One easy snack is a microwaved sweet potato.  Nuke it for 8 to 10 minutes and then dig out the innards with a big spoon.  Mix in some peanut butter or choc chips.

 

Super Easy Meal Ideas Anyone?
http://www.celiac.com/gluten-free/topic/97027-super-easy-meal-ideas-anyone/

Good Gluten Free Meals Prepared Using A Microwave?
http://www.celiac.com/gluten-free/topic/102685-good-gluten-free-meals-prepared-using-a-microwave/#entry885634
 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

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Thanks everyone for the tips and the welcome.  Actually things have seemed to have gotten better for her in the past day or 2.  We're finding more things we can cook that she likes and she even tried some Rudi's gluten-free bread and said it was ok for toast or breakfast sandwiches.  Probably gonna have to make our own at some point.  She's sticking to it which is good.  The bummer is that down the line when we can afford the test she'll have to gobble down the gluten and start this all over again.

 

Hoping to learn lots here!

 

Just wanted to mention that if she goes 100% gluten-free for a few months and gets symptom relief and then tries to eat something with gluten in it she is likely to have a fairly obvious and strong reaction.  I got glutened by accident after being gluten-free for 3 months and it was just like getting food poisoning.  At that point, it would be completely unnecessary to go through a gluten challenge just to get confirmation of what at that point would already be known... the only reason to have a reaction like that is if you have Celiac or non-Celiac gluten intolerance.

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