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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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LeahBanicki

A Relative Is Diagnosed Celiac- Won't Go Gluten-Free

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A close relative I will call Peggy, was diagnosed a few years ago with Celiac Disease. Before I was actually. None of my family knew anything about the disease.

Now several members of my are diagnosed and living gluten free but Peggy refuses to go gluten free cause she doesn't thin it will help. Her body is in pain all the time and her Kidneys are failing and growing horrible stones and now she is vomiting undigested food. I am so worried about her.

Just the other day I begged her to try and go gluten free so her body could heal. She said she would and then two days later she was eating a foot-long sub.

I love Peggy and want her to feel better. Not sure how else to tell her that her choices could be killing her. She moved away from the doctor from the original diagnosis so she has no one besides the family members telling her to be careful.

So frustrated and scared.

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Sadly, you can lead the horse to water, but you can't make her drink.

She knows, and she knows that you know. So, reminding her will accomplish nothing.

You have told her. There is nothing more that you can do. If she chooses to ignore it, that is her choice. Do not let it become YOUR problem.

It is hard to watch a loved one self-destruct, but there is only just so much you can do.

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I believe my family could benefit from going gluten free also. Two of them have pretty much told me I'm not giving up my food. Not only are gluten containing foods bad (for obvious reasons) but as I'm sure you know they are highly addictive and that makes it incredibly hard to stop eating them. I've been gluten-free for almost a year and I still find myself wanting to eat that stuff. She's just going to have to figure this one out for herself. You can only drill this into people so much. They have to want to do it for themselves. I hope she figures it out! Peggy is lucky to have you :)

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Can you get her to come here and talk to us? Maybe we can help her realize that no matter how far her disease has progressed the diet can help. Some of us just are so sick we have no hope before diagnosis and it is hard to grasp the idea that so much of our pain can be caused by what we are eating. That combined with the withdrawl can make the first weeks really tough.

That said you can't force her to go gluten free as much as you want to see her healthy. You're in a tough spot as it is hard to see someone we love suffer so much.

(((((((((((((((((((((((HUGS))))))))))))))))))))))))

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I have a family member this way as well, she's willing to listen but not ready to jump in. Although, I'll give her props, she's slowly begun to make the transition with my help. I figure that if she's slowly making the transition then it's a start, I give her recipes and when we have family parties my family always is super conscious of me being gluten-free. So it's easier to sit down and eat with me, maybe it's all about not feeling singled out? Not sure but it's working and I'm glad for her in that aspect!

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My younger brother absolutely must go gluten free. Unfortunately his blood test for celiac was negative so the GI told him gluten wasn't the cause of his many many many many health (physical and mental) problems. He kind of knows he needs to go gluten free but is worried about the cost, loss of convenience and giving up his favorite foods. He's a 40 year old grown man, so all I can do is lecture him when I see him (hey, I'm a big sister) and then watch him be miserable. Very painful.

I think just making your family member aware and gently educating her as you go along may help. One of these days she might just get so tired of feeling like crap all the time that she'll go for it. I'm sorry because I know it's hard to watch.

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I have to agree with Peter. It will not help to badger her.

If she is intelligent enough and has read about celiac disease, she knows she is doing the wrong thing.

I have dealt with this myself. My large extended family is full of people with AI diseases, GERD, IBS and other bowel issues, depression, etc. and it pains me to see them all ignoring the one thing that could help them resolve some of these problems. It is so hard to watch them, and I lost many nights of sleep worrying about them all and agonizing over "why don't they listen to me"??

They all saw me dying from it. They know what this can do to someone.

I was the first to be DXed, and they think I am the "only one". I have sent them a letter and literature to read and why it is essential to be tested.

My Dad surely died from complications of celiac, but I became very ill right around the time of his death, so I could not have known back then it was the basis of his many illnesses. His symptoms scream "celiac" and I see it pretty damn clearly now.

Only my 85-year-old Mom went gluten-free --about 5 months after my DX---and she feels great! :)

My doc even told to give it up. For my own sanity.

You are so sweet to care about Peggy, but Peggy has to learn to care about Peggy.

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Peggy needs to be informed, as others have said, about the risks and complications of celiac disease. I've been gluten free for about 12 years and have yet to personally know one other person who takes this condition as seriously as I have done over the years.

I was young at the time, too - only about 8 years old.

Do you have a celiac support network in your area? They may hold gluten free dinners at a gluten-free friendly restaurant every now and then and are a great way for celiacs to meet others who have had personal experience with the issues mentioned above.

However, at the end of the day, the choice is hers.

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Perhaps the only thing you can do now is to print off some of the stories of some of the ppl on this board who were way worse off than Peggy is now when they found out they were celiac & went gluten free. Then next time you visit Peggy, you could quietly leave those print outs at Peggy's house so she will be sure to find them. when she's all alone & finds them hopefully she will read those stories & see how these ppl have healed.

Everyone who has stories like that (like you IH) could leave a link to the post where your story is & Leah could then have easy access to them in order to print them out.

Otherwise Leah, my heart breaks for you & Peggy & for the suffering you go through watching a loved one destroy themselves. But I agree with everyone else here. Bottom line --- Peggy has to want to save Peggy.

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Maybe invite her over for a delicious gluten-free meal? Maybe once she sees that gluten-free can be just as tasty as gluten foods she'll give it a whirl. If you could just get her to go gluten-free for a week or two I bet she'd start feeling so much better she'd be GLAD to go gluten-free.

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Thanks everyone for the thoughts. It's great to have a place where I can air out my frustrations. Having a safe community to talk too is priceless.

Thanks Everyone. I will try and convince Peggy to join up and get educated.

Praying for her to get informed.

Thanks to my new friends.

~ Leah

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Maybe invite her over for a delicious gluten-free meal? Maybe once she sees that gluten-free can be just as tasty as gluten foods she'll give it a whirl. If you could just get her to go gluten-free for a week or two I bet she'd start feeling so much better she'd be GLAD to go gluten-free.

I just shared a piece of gluten-free chocolate cake with her. It was a great recipe. So glad to see that she liked it. Just wanting her to know it can be done.

:D

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I just shared a piece of gluten-free chocolate cake with her. It was a great recipe. So glad to see that she liked it. Just wanting her to know it can be done.

:D

That's a great start, and keep showing her it can be done! When she's ready you'll be there for her, and that's the best part, having an awesome support system! :) ....chocolate cake always helps too haha!

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Peter is so right. You can give her the info but you can't force her. I have a brother who doesn't care and three friends who I feel certain have celiac or would benefit from the gluten-free life. One friend told me she could never give up her bread and pasta and continues to suffer from chronic D. You can give it out but some people just don't want to hear. Gluten-free is a total and complete lifestyle change and it isn't always easy. Most people don't want the inconvience. Sad but true.

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I had a good friend years ago who had such terrible D and other celiac symptoms. I didn't have it back then but Mom did, and I KNEW that was her answer. Her doctor didn't have a clue, and just kept telling her it was IBS.

I BEGGED her to try a gluten-free diet for a while, but she said she REFUSED to have celiac because she just loved eating out. (She and her husband hardly ever ate a meal at home, and because they were well off, they ate at really good, expensive restaurants.) She would not even TRY gluten-free, because if it made her feel better that would mean she had it, and she said she would rather be sick and die an early death than to give up her fancy restaurant meals.

I've lost touch with her and have no idea if she has since changed her mind, or if she has now developed the complications we all know are likely...

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Yep. Similar situation here. Not celiac but food intolerances or allergies. Not sure which exactly. Just know what foods this person has said in the past that she can't eat. And then she eats them. And then she complains about how sick she is. And then she wants sympathy. Well she won't get it from me. I just leave. I won't deal with it. I do know in this person's case part of it is her age and the memory problems that she won't admit to having. She has said stuff like, "I never eat bananas and I don't know why!" Well... I know why. And recently she has eaten bananas and then got sick. Drives me up a wall. But there really isn't much you can do. She has also told my daughter and I that we are not allowed to discuss her diet in any way shape or form and if we do we will not be allowed back in her house. Yes, she is the very controlling sort.

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I had a good friend years ago who had such terrible D and other celiac symptoms. I didn't have it back then but Mom did, and I KNEW that was her answer. Her doctor didn't have a clue, and just kept telling her it was IBS.

I BEGGED her to try a gluten-free diet for a while, but she said she REFUSED to have celiac because she just loved eating out. (She and her husband hardly ever ate a meal at home, and because they were well off, they ate at really good, expensive restaurants.) She would not even TRY gluten-free, because if it made her feel better that would mean she had it, and she said she would rather be sick and die an early death than to give up her fancy restaurant meals.

I've lost touch with her and have no idea if she has since changed her mind, or if she has now developed the complications we all know are likely...

or...is already dead.

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People are stubborn. I have a brother who is at least saying he might try the gluten-free diet now, after years of being sick. So they can change sometimes.

Don't forget to try the gluten-free peanut butter cookies on her.

1 cup peanut butter

1 cup sugar

1 egg

1 handfull of Enjoy Life choco chips.

bake 10 minutes.

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People are stubborn. I have a brother who is at least saying he might try the gluten-free diet now, after years of being sick. So they can change sometimes.

Don't forget to try the gluten-free peanut butter cookies on her.

1 cup peanut butter

1 cup sugar

1 egg

1 handfull of Enjoy Life choco chips.

bake 10 minutes.

Thanks for sharing that. I could use a cookie today. Looks simple. :)

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People are stubborn. I have a brother who is at least saying he might try the gluten-free diet now, after years of being sick. So they can change sometimes.

Don't forget to try the gluten-free peanut butter cookies on her.

1 cup peanut butter

1 cup sugar

1 egg

1 handfull of Enjoy Life choco chips.

bake 10 minutes.

What temp. do you bake them at?

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What temp. do you bake them at?

Cookie temp, 350 F. Sorry, left that out. They are better than regular floury cookies too. They don't have a flour taste, which is not somethi9ng you miss once it's gone from a cookie.

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Cookie temp, 350 F. Sorry, left that out. They are better than regular floury cookies too. They don't have a flour taste, which is not somethi9ng you miss once it's gone from a cookie.

They freeze well, too. I have a lot of food intolerances, and this is one of the few desserts I can have. I make two batches at a time and freeze them.

They're also great to bring to parties because everyone loves them.

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Cookie temp, 350 F. Sorry, left that out. They are better than regular floury cookies too. They don't have a flour taste, which is not somethi9ng you miss once it's gone from a cookie.

Thanks gluten-free! NOW it's in my recipe collection.smile.gif

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I have a cousin who has a son who has all the signs of Celiac and is so allergic to MSG he has to carry an epipen with him. H'e like 12 now, and she would rather him have his epipen than try to avoid MSG let alone gluten. :blink:

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I have a cousin who has a son who has all the signs of Celiac and is so allergic to MSG he has to carry an epipen with him. H'e like 12 now, and she would rather him have his epipen than try to avoid MSG let alone gluten. :blink:

That is so saddening.

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    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com