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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Getting Married, Scared For My Future Children
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I've only been gluten free for about a year now. Things still aren't going so well for me with the diet. I am currently engaged and getting married in October. I am so worried for my future children. It breaks my heart to think that I might be the cause of something like this on them. I have always wanted a big family. My fiance and I have talked about having 5 kids. Everytime I think about my future children possibly becoming celiacs it brings me to tears. Is there anything I can do to help cope with this?

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I don't know if you are religious or not, but if I were you, I would remember that what we "inherit" and what we don't is God's will. We cannot control these things. Your children could be born with Celiac disease whether or not you have it. The great thing is that you'll be more in tune with food interlorances/allergies, which are getting more and more prevelant each decade. Whatever happens, your children will be in good care and, in my opinion, gluten and processed foods aren't good for most children anyways.

BTW, I know I'll take a bullet for this one, but I was a strict vegan for almost a decade, until I got so sick my hair was falling out, my thyroid was in terrible shape etc. I see that you are a vegetarian. I can't advise highly enough that you monitor your intake of soy. The way we fracture it here to make soy dogs and soy burgers and soy this and that causes many inflammatory problems (I recommend you read about the subject on mercola.com . . . it literally saved the quality of my life). I'm just assuming you've replaced meat with soy, but maybe not. But if this is the case and you eat it daily, it may be causing you problems that you are currently attributing to cross-contamination or accidental glutening. I'm not saying you can't be a vegetarian, but just watch out for this, it took me a long time to figure this out myself.

Congrats on the engagement. Marriage is a wonderful journey!!!

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I agree...I'm not anywhere near old enough to get married (imho) but I pray everyday that God will let it pass over my kids.....

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I guess I see it a different way. I plan for my future kids to BE gluten free as long as they are at home. That's whether they have it or not. When they grow up and get out on their own they can experiment with gluten and find out if they are able to eat it. They will have my blessing to eat whatever they want when they are on their own, but they will have the advantage of knowing about the dangerous health risks associated with Celiac disease and how to spot the signs. There are many societies where bread and pasta is not a staples of the diet like it is here in the US. There is no danger of malnutrition from NOT eating gluten-containing grains. The worst thing about this disease is probably the social aspects. But as more and more people learn about celiac disease/gluten intolerance there is more understanding for alternative diets.

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BTW, I know I'll take a bullet for this one, but I was a strict vegan for almost a decade, until I got so sick my hair was falling out, my thyroid was in terrible shape etc. I see that you are a vegetarian. I can't advise highly enough that you monitor your intake of soy. The way we fracture it here to make soy dogs and soy burgers and soy this and that causes many inflammatory problems (I recommend you read about the subject on mercola.com . . . it literally saved the quality of my life). I'm just assuming you've replaced meat with soy, but maybe not. But if this is the case and you eat it daily, it may be causing you problems that you are currently attributing to cross-contamination or accidental glutening. I'm not saying you can't be a vegetarian, but just watch out for this, it took me a long time to figure this out myself.

Congrats on the engagement. Marriage is a wonderful journey!!!

I totally agree about the soy replacement foods. I was vegetarian for 5 years and all the soy burgers and tofu did not make me healthier during that time. I was always very low energy with more aches and pains due to the soy.

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If not celiac, then what? No one is perfect. When you agree to have a child, you get what you get for the most part. And even if they come out perfect at the beginning, it doesn't mean they won't get meningitis at three and be brain damaged. Does that sound mean? I don't mean it that way, but agreeing to be a parent means putting aside your own expectations of what "should" happen. There is joy in parenting all kinds of kids. And never underestimate the power of your influence over your kids. If you teach them that it stinks to have celiac, they WILL agree with you. If you teach them that your health is important and food isn't the end all, be all of every social situation, they will learn that, too.

Be married for a while. Five kids is a lot of kids. A lot. I never wanted any, and now I wish I had at least two more. My SIL wanted six and can barely deal with her two. You won't know until you have your first.

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As far as health issues go, I don't have more than my one and only because my body can't handle it. Otherwise, on their side of the picture, I would have no hesitation. I look at it this way, my kiddo has such an advantage over past generations since his mom is up on these things and we have some clue what his genetic makeup predisposes him to so we can keep an eye out and hopefully spot things.

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It was something that crossed my mind when we decided to have a kid. But, really, the gluten free diet is not the end of the world. It's not as problematic as so many other things that are genetic. (We've got heart disease, breast cancer, rheumatoid arthritis, obesity, high blood pressure, and other issues in our blended family that my daughter gets to inherit from. I think those are all far worse than celiac.)

As trilliumhunter said - expectations aren't really useful with kids; what will be will be. Seven weeks in to parenthood, I expected to have breastfeeding down pretty well, I mean the human race needed it for survival for millennia, but no, we're still having issues with her not mauling my nipples. (We're working through it with the help of an OT and PT who specialize in newborn feeding issues.) Seven weeks into parenthood, I expected to be able to get out and about at least a little - go for regular walks every day, perhaps, but no, it's subject to when she wants to eat, if she'll not cry about being in the carrier or stroller, and when she next wants to eat. Seven weeks in, I didn't expect to still be so tired that it was unsafe for me to drive, but many days, I won't get behind the wheel because I didn't get enough good quality sleep. Seven weeks in, I didn't think I'd be medicating my baby, but she's on Zantac for reflux that was not dealt with through position changes, dietary changes, and feeding changes. So, lots of expectations dashed in less than two months. I'm sure there will be more along the way - it appears to just be a part of parenthood. :)

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It was something that crossed my mind when we decided to have a kid. But, really, the gluten free diet is not the end of the world. It's not as problematic as so many other things that are genetic. (We've got heart disease, breast cancer, rheumatoid arthritis, obesity, high blood pressure, and other issues in our blended family that my daughter gets to inherit from. I think those are all far worse than celiac.)

As trilliumhunter said - expectations aren't really useful with kids; what will be will be. Seven weeks in to parenthood, I expected to have breastfeeding down pretty well, I mean the human race needed it for survival for millennia, but no, we're still having issues with her not mauling my nipples. (We're working through it with the help of an OT and PT who specialize in newborn feeding issues.) Seven weeks into parenthood, I expected to be able to get out and about at least a little - go for regular walks every day, perhaps, but no, it's subject to when she wants to eat, if she'll not cry about being in the carrier or stroller, and when she next wants to eat. Seven weeks in, I didn't expect to still be so tired that it was unsafe for me to drive, but many days, I won't get behind the wheel because I didn't get enough good quality sleep. Seven weeks in, I didn't think I'd be medicating my baby, but she's on Zantac for reflux that was not dealt with through position changes, dietary changes, and feeding changes. So, lots of expectations dashed in less than two months. I'm sure there will be more along the way - it appears to just be a part of parenthood. :)

BTDT---it will pass. It's hard now, but you'll forget what it means to be too exhausted to drive. My hardest baby is now my most delightful teen. My easiest baby is now a very challenging tween. You know in some cultures a woman would just be reentering society. Here we expect women to be back to a 60 hr week at 7 weeks.

Take care of you and your beautiful baby! The rest will come. :)

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You are all so right, celiac is certainly not the worst thing in the world! As the sister of a special needs kid I can attest to this....I don't have nearly as many complications as she does....

And every kid if a gift from God....

If you think you are mature enough to have kids then you should be mature enough to understand that every kid is different right?

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Don't look at it as a curse...look at it as an opportunity to teach about all the great foods out there that CAN be eaten. Think outside the box. And honestly if you introduce this type of eating lifestyle from the beginning they will not know any different. Yes there are the social occasions and eating out that is a pain...but if you teach them well it will be second nature to them.

Wheat, barley, and rye are not a necessity in any diet. And there certainly are way worse things than being Celiac.

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I am religious which makes it easier sometimes. Some days I think of this as a sort of blessing, maybe my life would be alot different if I wasn't a celiac or perhaps it will lead me to doing something I wouldn't generally do. Some days I just break down though. I am sure it is that way for everyone.

I actually don't eat too much soy. Occasionally some tofu, maybe two or three times a month but I thought that tofu was fairly safe.. I used to eat the dogs and stuff but I have only found one brand of veggie burgers that are gluten free.

Thank you for the congrats and the advice :)

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Thanks everyone for the support and wise words. I understand that it isn't the worst thing and that every child is different, that is what comes with being a parent. I just worry for the difficult times. It's hard enough being a perfectly healthy child. I know there will be a lot of plus' growing up with the knowledge, better health, and strength for them.

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Congratulations!

I think you would make a great parent. You are already thinking about the well being of your children. You are accepting what the parents here have told you here. Every pregnancy is different. Children are thier own little person even in the womb. I kinda think, they are the greatest gift you never knew you wanted. You get to find out who they are and nurture the talents you find.

Who knew I would ask my daughter to draw something? I wait for her to finish, like I'm waiting for a Christmas present.

Who knew I would buy my first baseball mit when I was 35? My son has been playing baseball for about 4 years now, and I can switch hit just like him. Now that he's bigger I need catcher's protection. :o

You will find yourself doing things you never thought you would do in a million years. i.e. trying to catch your kids puke with your bare hands. :rolleyes:

I wish every one would stop to consider what being a parent means, before they have kids.

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I just found out about 2 wks ago that i have Celiac. Ten yrs ago i was diagnosed with Graves disease and it has always been in the back of my head that one of my children may someday have this. Now i have to get all three tested for Celiac and all i can do is pray that they don't have it...but if they do, then i know i caught it early and there may be a chance they won't have other health issues because of it. I know it will be trying if even 1 of them have Celiac. I am having a hard enough time changing my diet..getting them to will be ridiculously hard, but it will have to be done.

Everyone already has their own allergy... mine is cats...my son is dustmites...my daughter is pollen....and my youngest daughter Peanuts, so we do have some experience dealing with allergies. I did not expect any of this when i had my children and if i knew these issues would come about i would have had them anyway.

There are good days and bad days....we've had many scares with fingers being cut open, chins being split, hospital stays, seizures(my son had them till he was 12)

choking, near drowning...I could go on and on. All these things are very stressful and scary but you get by them and years later you say "remember when". Life is full of ups and downs and winding curves, especially if you have children. The enjoyment of watching them grow is well worth it all. When you see that little face smile up at you..you know you will do anything in the world for them. Good luck with you choice...only you know what's right for you.

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I don't have Celiac and neither does my husband, but we passed it to both of our kids...... Out of your control. My kids are the healthiest kids in their circle of friends. I don't feel bad at all that they are forced to eat a healthier diet with minimal processed foods. My husband has a really rare eye disease which was a factor when we were ready to conceive, we went through all of the genetic counceling, but ultimately, we both wanted kids badly, it's something that is manageable and fixable, so we went forward.

Preface--I'm not telling the following to be hurtful in any way shape or form, but this is life and it's ALL in God's hands...

I have a coworker who's wife had a baby last year. Normal pregnancy, everything looked great. Baby started having seizures the minute he was born and is now severely brain damaged. Neither parent has a seizure disorder

Husband was born totally normal, his sister was born with CP, another coworker had the same scenario

You can't control what God gives you. Personally, I think if you want to have kids, go for it!!!

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My girlfriend has Celiac, and because of the advanced stage of it when she was diagnosed she is also very sensitive to casein, a protein found in lactose. She is a Type 1 diabetic, and has a kidney disease that--while dormant--means that she needs to take really good care of herself or she could quickly be looking at needing a replacement.

When I was learning about Celiac, I found a lot of clinical information. But I realized how completely inadequate I was when I was walking through Fred Meyer, one day. I decided to try to shop how I would if I were her. After an hour of walking around, I fell into a pretty acute depressive state for about 10 minutes as the reality of "this is *really* not easy* kinda sunk in, and seeing how much was unavailable. It was later on that night that I came across glutenfreemom.com.

http://www.glutenfreemom.com is an excellent resource for people with Celiac who haven't had a lot of support, or for people who want to see a slice of life of a family who is gluten-free. The tagline is "Because LIVING gluten free will not stop you from living the life you choose."

It is written and upkept by a real mom in a real family whose daughter was diagnosed with Celiac. She says, "I am not a doctor, nutritionist or a psychologist - I am just a Mom who is feeding her family gluten free and, as such, this web site is based on what we have found while journeying down this gluten free road."

It was such an amazing find, for me. It got me excited. They were living their lives. They have gone to Paris. Germany. Hawaii. RV'd across the US. She has recommendations for how to eat out, to allow her daughter to sleep over at friends' houses safely, and to make her not feel alienated or "different" at school. Practical, relational, real-life applicational stuff.

And I get to learn how to cook! As scarlett77 said, there is *so much* available that is gluten-free if you cook stuff instead of getting prepared foods (http://www.celiactravel.com/articles/what-does-a-gluten-free-diet-consist-of/)

I'd highly recommend checking it out. In reading different Celiac forums, there's a lot of support that is needed. This blog, I believe, may serve to give people some hope.

I know I'm speaking from the viewpoint of someone who doesn't have Celiac (or lactose intolerance or Type 1 diabetes or kidney disease), but there is so much life that you can live. Sites like glutenfreemom and http://celiacbymarriage.blogspot.com show that there is a hope and a future, not for merely surviving but for thriving in your environment.

I also recommend a book called "Eat to Live" (http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Eat-Live-Revolutionary-Formula-Sustained/dp/0316829455). It is one of those books that is transforming my life through challenging my current understanding of things, presenting me with good evidence, and communicating it in a way that is simple.

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Since my son (6) was diagnosed 9 months ago, we have VASTLY improved our lives. I tested positive too, and just feeling better has made a big difference (didn't even know I had anything, just thought I was getting old and tired.)

Since our home is basically gluten free, we eat more meals at home, spend more time cooking as a family, eat a much healthier diet (no fast food, not much processed food, etc.etc.) Everyone (even the gluten-eaters) are benefitting from this. We still travel, have friends over, eat at other people's houses (I bring food for me and gluten-free son), etc.

My son is young enough that by the time it becomes a challenge (teen years? hanging out with friends at the mall and eating Cinnabon? I have no idea) college (keg parties, ?) he will already be used to the diet and kind of doesn't even miss the gluten stuff from the old days. I still crave brick-oven pizza.

It seems like every month a new bakery opens here . . . or a new product becomes available. It is only going to get easier and easier to be gluten free.

If I were younger and starting a family, I would just start out gluten-free from the beginning. From everything I have read, it is healthier for everyone anyway.

I wouldn't worry too much about it. In our circle of friends and acquaintances, my child with Celiac is the LEAST problematic issue. Everyone else I know seems to have kids dealing with much bigger challenges - and they were all taken by surprise. You at least know what to look for and have experience with the diet, should the need arise.

I didn't develop celiac disease until after my second child was born - in my late 30's. Even if your kids inherit the genes, they may never even develop the disease.

Congratulations and best of luck to you.

Cara

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First of all, congratulations on the engagement and upcoming marriage!

I can understand where you are coming from. Our daughter was diagnosed when she was 21 months old, and my husband and I were deciding whether or not to have a second child - especially when we found out my husband also has the disease. In the end we decided that the joys of having a second child who may have to deal with celiac disease then letting fear rule us. I am not all that religious, but I see what a wonderful, caring, compassionate, conscientious girl my daughter is turning out to be. In a sense we were lucky she was diagnosed so early - she has no difficulty with the diet because she doesn't remember any different - all she knows is that gluten makes her sick, so why would she ever want to eat it? She is almost four now, and she can read the word 'gluten' and we are working on wheat, barley, rye, and oats. But because she has had to deal with this disease basically for as long as she can remember, she is so understanding and caring for any other person who has allergies, medical issues, or disabilities compared to her peers. She is learning to be appropriately assertive about her medical needs with her teachers, and be aware of what she puts in her body. And she is only almost four. I am an optimist, and I think I am passing that on to my children, but I agree with the posts before that parenthood is completely unexpected and unable to be planned for (I too planned on natural childbirth and breastfeeding, I got 2 C-sections and formula feeding after 4-6 weeks for both kids).

It is a worry, but there are so many more severe problems with much more difficult solutions - at least that is how I have learned to deal with it as a parent.

Good luck!

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