New Pregnancy and Just Diagnosed with Celiac Disease

Hello and congratulations on your pregnancy, and also on your diagnosis.

I am a mom of Celiac kids and I'm glad to tell you that the info you are getting about damage to your fetus and breastfeeding is wrong. It is really wrong. Please go to an endocrinologist who is experienced in Celiac Disease for your information. Emanuel Hospital has some good ones.

You Can NOT pass Celiac Disease to anyone in any way except genetically. If your children have the gene for CD, they already have the gene. Doesn't mean they will have active CD as you do, but they have the chance. Without the gene you will never get it. With the gene you might.

Research shows that babies with the CD gene who are breatfed resist CD for longer than babies who are bottle fed. Breast feeding is great for babies of CD parents. I don't want to give you much more info, I really think you should see a specialist and not listen to anyone (even me)who doesn't know what they are talking about.

Please go and get some appropriate, expert advice. CD does not have to be dangerous or upsetting if treated well.

I don't have any advice for you, but I will be praying for you.
I'm at the beginning of a pregnancy myself and it is so easy to get freaked about the possible things that could go wrong. I just remind myself that God is in control.

J.,
Were you diagnosed by your Naturopath or by a gastrointerologist? If you did not have a positive small bowel biopsy or a positive blood test you probably have a gluten intolerance. While displaying many of the same symptoms of Celiac, it is not Celiac disease, it is an allergic reaction. This is important because, to the best of my knowledge an intolerance does not cause the same malabsorption issues that Celiac disease causes. Your body still absorbs all of the necessary nutrients, you just have intestinal problems or possibly migraines. Also as noted in numerous other emails, you can not pass Celiac disease on to your baby. They may inherit the same intolerances or genetically have Celiac disease, but you can not give it to them. A great web site is www.celiac.com.
If you have an allergy (I do), you can eat wheat and not damage yourself nutritionally, however there is good evidence that a gluten free diet substantially improves symptoms of RA. It is not a cure! It simply helps aliveate the inflamation of RA. Also, when you do eat wheat, you may react allergically with symptoms. I have diarreah and debilitating stomach aches. My son has migraines and stomache aches. I have been GF for 3 years. The diet is an adjustment, but there is tons of info out there. The web site I mentioned has lots of links. Spend some time and educate yourself. It is a completely managable diet, it just takes some getting used to. If you want some recipie ideas or what to buy at the store, I would be happy to respond.

I was diagnosed with celiac disease a year after the birth of my son. It totally explained a lot of things such as being extremely anemic during that pregnancy. So, from Dec. 05 onwards, I have been on a strict gluten free diet. Just 17 days ago, I had my second child - a girl. I stuck with the gluten free diet during the entire pregnancy, and had no issues the entire time. My OB, Ped, and GI did not mention any issues with being pregnany and having CD. Actually, I felt great! Basically, just stick to the gluten free diet, and the nutrients / vitamins will stay in your body and also be passed onto your baby. I have never heard that CD can be passed onto infants through nursing. It is a genetic disease -either people are born with or without that disposition. People have the gene, and something stressful (i.e. pregnancy, surgery, illness, etc.)triggers the symptoms and issues of celiac disease. I think the question to consider later on is when / if / how to introduce gluten into your young child's life. Again, stick to the gluten free diet and you should be fine. Good luck!

Hi J.. I'm sorry to hear that you are going through this. Trying to eat right is so stressful when you are pregnant and especially if you are dealing with something like Celiac disease. I have a wheat sensitivity (so not even close to Celiac's but I have learned a ton about how to eat "gluten-free." If you are not familiar with this way of eating, it can be VERY overwhelming. For me, I have actually had to eliminate grains of ANY kind out of my diet and not just gluten grains. This for me includes rice, corn, oats, and any other grain you can think of. It has been challenging but I have found some great products that have helped me get through. If you can have rice, you have a whole world of products available to you like rice pasta (lundberg farms makes a reall good one). There are also a lot of gluten-free flours and mixes available at the store now (mostly Whole Foods and New Seasons). You may already know of a few good online resources, but I know a lot of moms love www.glutenfreemom.com for helpful tips and recipes for living gluten-free.

I know it's hard not to worry, but we have to realize that we always do the best we can with the information that we have at the time. I pray for you that you can put your worry to rest and that you will get some great advice from others in this group.

Hi J.,

I am not pregnant currently nor do I have celiac, but my friend was just diagnosed with it and as Liz said it is genetic, not passed through pregnancy or breast milk. A simple blood test can tell you if your children have it. My friend self diagnosed herself and then was tested and it was positive. Then she had to have a biopsy to confirm the blood test and I guess see how bad it was. They took a little biopsy out of her intestine and it confirmed it. She had her son tested and he was negative. I agree with Liz see a specialist, everything you were told sounds a little off.

Take care of yourself,

J.

First of all Congratulations!!! I too am newly pregnant with number 3 ours was quite a suprise. I personally havn't even heard of Celiac disease. I have found wonderful support on the ivillage message boards so far this pregnancy. I searched ivillage boards for you and found this : http://messageboards.ivillage.com/iv-bhceliac?ice=ivl,sea...
I hope this helps. I wish you all the best for the next 9 months.
W.

I just read some other responses....I agree strongly with the person who talked about a small bowel biopsy. That's the "gold standard" for diagnosis of Celiac Disease . If you haven't had that done, do that first.

My husband has Celiac Disease, so I know quite a bit about it. I don't know the ramifications of having the disease while pregnant, but I do know that you can not "pass it on" to a child through nursing. That's sounds ridiculous to me based on what I know.

I had a concern about doing possible harm to my baby (who might be Celiac) by breatfeeding while having gluten in my diet (I do NOT have Celiac). Even that is not a factor. The problematic proteins are broken down by my body and aren't tranferred to the baby. I have confirmed this with experts from the Center for Celiac Research at the University of Maryland.

I recommend you visit sites on the Internet like Gluten Intolerance Group based in Seattle (www.gluten.net), the Celiac Disease Foundation (www.celiac.org), and the Center of Celiac Research at the University of Maryland (http://www.umm.edu/celiac/). You'll get accurate information there rather than hear-say. There are also local support groups available. Gluten Free Living is an excellent publication for accurate info.

There are tons of online stores to get gluten free food. Fred Meyer, Whole Foods, and New Seasona Market also carry gluten free items. And there's a local store called Lingonberries Market that's totally gluten free (6300 NE 117th Ave in Vancouver). There are also quite a large number of gluten free cookbooks available nowadays.

It might be a good idea to have your children tested for it, althought it's my understanding that the blood test isn't very accurate for children under two years old. It is a hereditary disease. I'd try to find a doctor who knows a lot about Celiac. Most don't. It's well known in Europe, but in my opinion the medical community in the U.S. is not really up to snuff on Celiac.

Once you're well-informed, it won't be so scary! Best wishes to you!

J.,
Congratulations and commiseration!! BIG week for you.... I had not heard that about Celiac and pregnancy, so can't advise you there, but I CAN address the nursing question: you can NOT pass Celiac by nursing, and in fact if it is genetically a factor for your baby, the protective elements in your breastmilk become even more essential for your baby's digestive health. SO feel fine about nursing this one too, and best wishes to you!!
E.

I have celiac too. I had a horrible pregnancy and thats probably why. I wasn't diagnosed until after I had my son. I lost 20lbs. the first 3 months. I wasn't able to breast feed, but I know that celiac can be genetic too. So I worry about my little boy all the time. I simple watch for signs like weight loss, frequent tummy aches,vitamin deficient, stuff like that. I would love to share my favorite recipes and stuff with you. I have been Celiac for 2 yrs now. But I know alot, and I have my favorite books and recipes.

A.

Hi J.,

I really think you need to check your information. It seems that you are getting more worried than you should be. I can show you a photo of a perfect 7-month-old who is still being breast-fed, and is beyond healthy despite having a mom with celiac disease. Your other kids are fine, right? Please don't use JUST a naturopath for your health needs. There are amazing advances made in the field of medicine every day. Remember, celiac is easy to control. And if you inadvertantly get some gluten in your food, it's not going to be a major disaster. I think that someone is giving you some bad information that you simply don't need to hear. Good luck to you!

Well, we are definately in the same shoes. I am not pregnant, but have been following the gluten free diet for about the last 8 weeks. I am a SAHM with a 4 1/2 boy, 2 1/2 boy and a 7 mo girl, and I am also married to a wonderful man for that last 7 years. I to am seeing a natural path, and the diet has definatly made me feel better, though it is really hard to stick to, everything has gluten in it along with all the really yummy things ie cinammon rolls.

Anyway Celiacs Disease is not past to your children through breastfeeding, so don't regret your choice to breastfeed your kids. It is a genetic condition, so even if you formula fed your kids they could still get it and breastfeeding is way better for them. My great grandfather had it, and my grand mother had, and I wouldn't be suprised if my mother has it as well. Often people do not show signs of it till later in life, and stresses of the body, like pregnancy and birth can bring on symptoms. And it is not a disease the you suddenly got like the flu, people with celiacs are predisposed to the condition and usually some sort of stress brings on symptoms. Also no two people have the same exact symptoms, their is a wide range of symptoms. For example in my case I have Thyroiditis and you have Arthritis, but they are both autoimune diseases. Do some research and ask your doc lots of questions. THis is a life long change, and not adhering to the diet can cause serious health issues. As for being pregnant, I am sure you can have a health pregnancy and a beautiful child even with this diagnosis. I believe I have had a problem for quite some time, probably through all of my pregnancies, and I have healthy beautiful children.

As a last note there is a great cookbook my natural path, recommended and I do as well. It is called "The Whole Life Nutrition Cookbook" by Alissa Segersten and Tom Malterre.

Living with Celiacs is a whole life style change and you can't expect to make the change in a day, but it is worth it for your health and there are still lots of yummy things to eat. YOu have to relearn what is healthy for you and how to shop for that.

Good luck,
M.

my letter is to ease your mind. While it is serious, & you need to get serious about a gluten free life, i had celiac (undiagnosed) since I was 19. I birthed my first child at 29. she was allergic to dairy products in my breast milk, (you will see that dairy allergy is the first symptom) and onions. she grew out of the dairy allery, & never developed celiac. She is 19 now, was a valedictorian in high school. I birthed my son when i was 33. (I was still undiagnosed) I was now dairy free & raised him that way. he had no dietary issues until he was 13. After a stressful event (death in the family) He was diagnosed, and since it is genetic, it was then that I figured out that I had had it all along. Neither of them had trouble either inutero (sp), nor during nursing. My son is 15. Learning the gluten free life is a steep learning curve, but we were quite happily gluten free. I can tell you which restaurants are safe to eat at. It sounds like you've probably found Celiac.com, they are a wealth of knowledge.

So my advise is don't fret about the past, it doesn't usually cause sudden death, like a peanut or shellfish allergy, but long term symptoms. 40 X more likely to get intestinal cancer. Don't mess with it, & get off gluten,

Feel free to contact me, I can fill you head with lots of information.

A. V

hi,
my mother has celiac and has had symptoms all her life but did not get it diagnosed until I was in second grade (I am turning 40 in a few months). At that time Celiac's was almost unheard of. I am the youngest of five children and none of us have it (we have been tested). Since she did not know she had it or had ever heard of it, my mother did nothing to "manage it" during her pregnancies and we all turned out just fine. My mother loves bread and always has so I can be pretty certain that she was eating it during her pregnancies. Once she was diagnosed, she still eats it, just in small quantities and not every day. Obviously, your other two children turned out fine and you had Celiac's with those pregnancies since it is not a disease that you "catch", it is an auto-immune issue. As for giving a child Celiac's through nursing, I do not see how that could be since again, it is not something you "catch" or are able to "give". Your children may have Celiac's due to genetics from you but I do not think that you should get yourself worked up about "giving" it to your baby when you nurse. Get your questions answered by your doctor and if the answers seem extreme, maybe get a second opinion because my family is living proof that Celiac's during pregnancy is not a catastrophe waiting to happen.

Hello. WOW... talk about a lot on your plate. I commend you for being so strong. I have a product that may help you. I know it works for arthritis, but not sure about Celiac Disease. I can research it. Please go to my website and look into it. I would be happy to answer any questions if you contact me. Anyways, I know it wouldn't hurt to try it. It's totally safe to take while pregnant and nursing as it's an all natural juice. I drank it through both of my pregnancies and while nursing and I have VERY healthy children! My 3 year old has only had 2 colds his whole life and the 24 hour flu once. That's huge for a 3 year old in preschool!!! Please contact me, I'd love to talk to you further and try and help.

www.mymangosteen.com/bandt

J.,
I have been dealing with this diagnosis for over 14yrs. Today, things are easier for me. When I was pregnant with our second child, I still ate wheat products because I didn't like my bread, and it was too convenient to stop at Burger King when I was hungry.
Our son is just fine. He doesn't tolerate cow dairy, so I give him goat,which is what I eat too.
I shop at New Seasons and Ener-G foods for Wheat, Gluten, Soy, Yeast and Egg free products.(Yes, these are just part of my allergies.)
Ener-G foods makes white or brown rice bread, they also make tapioca bread. They have pizza skins and snack treats. I purchase flours from them for baking. My favorite thing they have is a english muffin with sweet potato. That is really good.
Bob's Red Mill also has a gluten free biscuit mix that has a recipe for pandcakes.
Quinoa is also a great grain to eat that doesn't tend to bother celiac's.
Everything tastes different and the consistency of the breads are very dense. What I have come to learn is that I would rather get used to the foods that don't hurt me than take a chance on something that might or will.
If you would like the web-site, or more info from me, e-mail me back.
Be Well, A.

Hi, my name is C. W.. I am newly pregnant and it's my first time getting pregnant. I am only 18 yrs old. Even though I am very happy and excited about my baby and my new future of being a mother I am still scared. I too have Celiac Disease. I was diagnosed in December of 2009 in my senior year of high school. When I found out that I had this I didnt stay on a gluten-free diet while I was in school. And for a few weeks or so I was still not on a gluten-free diet after I graduated. But since sometime in June I have been on a gluten-free diet. I dont know when I got pregnant but I think I'm like a month in and that scares me because I dont know if I slipped up on my diet while pregnant or not. I'm scared that I hurt the baby and I'm scared of losing my baby, my first baby.

Hi,
I am a mom of 2 girls with Celiac and am about to find out if I have Celiac as well.

First- you cannot 'pass' celiac on to your children through breastfeeding- it is a genetic disease that they are going to be at risk for just because it is passed genetically whether you breast feed or not.

My youngest child tested positve for having the Celiac gene but at this point shows no signs of food sensitivity and tested as having no reaction to wheat and gluten at this point. This does not mean that the gene cannot be activated at anytime so we keep her on a gluten free diet to hopefully prevent any future problems.
Your children may not show an obvious sensitivity but this does not mean they are not affected. I would suggest getting them tested through enterolab.com - this has been the most informative and helpful testing for me.

Please feel free to eamil me for recipes or information. I have had my girls on a gluten free diet (as well as corn and egg free) for two years now- I would love to share with you our experiences and victories. ____@____.com

in the meantime- don't stress. Do your best to avoid gluten- there are so many other flours out there that you can eat and enrich oyur diet with- it is a bit more challenging but it is worth it, eat a lot of whole foods and talk to your naturopath about probiotics that are appropriate to take while you are pregnant- this will help expediate the healing of your gut and get your body and your baby the nutrition you both need.

Congratulations!!

Hello. I do not have celiac, but a friend of mine had several miscariages before finding out that she is. Once she was diagnosed, she was able to carry her now 1 year old to term and he is very healthy! She is now expecting again and doing well. I think that she found that it was easier for her and better for the baby to just stick to the diet. I know there are cookbooks available. You can do it! I wish you the best and here is a recipe to get you started: Super easy Peanut butter cookies

1 cup peanut butter
1 cup granulated sugar
1 egg

Beat this together then spoon into balls and mash with a fork. Preheat oven to 350. Bake for 12-14 min.

I know it sounds to easy to taste good, but they are awesome!!!

What have you read? I recommend the book Nourishing Traditions. It helps you get away from the modern American diet and take back your health. There may be something in there that helps.

Celiacs is highly genetic, which may be where the breast milk confusion is. Everything our Allergist/Auto Immune Doc has told us indicates that breastfeeding is the best way to combat allergies and all disease, including Celiacs. Preliminary studies are also showing that Vitamin D deficiancies have a corrolary relationship to food allergies and sensitivities. I would pump up the Vitamin D and go wheat free as soon as possible. Celiacs causes you body not to absorb nutrients when gluten is consumed which is probably the key danger in pregnancy. But your body will speedily recover once you go wheat free.

Wheat free is really easy once you find good substitutes. Try the health food section in your grocery store or if you have a Whole Foods try them - they have like 4 whole gluten free sections. Also try Bob's Red Mill for baking http://www.bobsredmill.com/gluten_free_info.php, Pamela's for premade sweets, http://www.pamelasproducts.com/, and Ener-G for crackers and snacks, http://www.ener-g.com/

I know this is alot to take at once, but it really does get easier. Good luck and email me if you need help or want recipes.

A.

Hi J.-

I have several ideas I would love to share with you that may be of tremendous help. My professional background is in nutrition/health and finance; health, wealth and prosperity!

Last June I discovered an organic, liquid, whole food source
(not to be confused with a nutritional supplement or juice!)that has been around for over 25 years, that is primarily composed of 9 sea vegetables, aloe vera and small amounts of black cherry. I have since shared this product with many others who are in all kinds of different states of health. This includes individuals with Celiac disease and pregnant/nursing Moms. Those of us that are consistently taking this liquid food called "Body Balance", are experiencing varying health benefits such as diminished joint pain, less cravings, weight loss and/or weight gain depending on the individual, improved eyesight, more vitality and energy and a greater sense of well-being. I recently took a sample to the head of the Linus Pauling Institute. He was quite impressed with the complete nutrition in such a small dosage. This may be a great way for you and your baby to get superior nutrition without the fears and obstacles that a person with Celiac disease confronts on a regular basis. It's so important that you feel joyful during your pregnancy and not have this kind of anxiety. You are all going to be healthier in the long run as you learn to live with this condition. To learn more about Body Balance, you can visit my website: www.lifeforce.net/20656923 Hit the product tab and you can read about Body Balance. The owner of the company invented Body Balance over 25 years ago for his wife who had an auto-immune disorder and was not expected to live. To this day she has a very happy and healthy life thanks to Body Balance. I would also be happy to send you more links regarding the healthful benefits of seaweed and aloe vera.

I would also like to refer you to a local RN who specializes in Celiac Disease. She has battled it her entire life and almost died. Her life work is now dedicated to helping others with Celiac Disease learn how to live healthy lives. She approaches her work with such a high level of professionalism and compassion and has already saved the lives of many people in our community. Her name is Nadine and you can reach by e-mailing: ____@____.com

My last suggestion is that you read the book: THE MIRACULOUS PROPERTIES OF IONIZED WATER by Bob McCauley. You can also visit his website: www.WATERSHED.NET Hopefully his research will inspire and enlighten you as well.

You sound like a very dedicated and loving mother and spouse.
Trust your instincts and be happy and grateful for the tremendous amount of love that surrounds you.

Best wishes,
L. Crisp

Dear J.

Celiac disease starts in early babyhood. You are born with it. My first child had it. She is female and bore a boy who is a carrier.
I am a carrier. My father had it. Now you see four generations. Let's get real. My daughter was sick to her stomach her entire pregnancy. She ate normally. Celiac is a
disease you grow out of from the time you stop teething or when you are six or when you enter puberty.
My daughter is 45 so we did not have all these fancy diets around. I used the old standbys of bananas, hamburger, cottage cheese and nothing with milk in it other than that. It was repetitive but it worked. By the time she was two it was over and we went onto a regular diet without dairy products.
Here are a few tips.
-DO NOT GET VACCINATED FOR ANYTHING WHILE PREGNANT.
-Your naturopathic doctor could be wrong. I am an alternative healer more than 35 years in practice. I have seen lots of hysteria amongst natropaths. Get a second opinion. Even tests have been known to be wrong. Even tests for serious diseases.
-One sure sign of celiac disease is bowel movements that are sticky, yellow and look like tiny curd cottage cheese.
-Celiac is hereditary. Carriers have serious allergies and asthma. If your other family members do not have allergies or serious ones they are not carriers.
Celiac does not suddenly develop in an adult. If you did not have it as a tiny infant or small child get a different naturopath.
-If your husband is not a carrier you will not have a child born with the disease.
About me:
I am a mother and grandmother and an author of three books on healing and shamanism which have been translated into 12 languages. I have a long career of teaching and seeing clients.
Relax and have a healthy baby.

I have had celiac since I was an infant. I have 4 children and never had any issues or problems with causing them any defects when I ate the wrong foods. The only issues I had when eating the wrong foods was that my body did not retain them, they went straight through me. It's news to me that you could cause defects with your children if you ate the wrong foods. As far as I knew, celiac was a hereditary thing, so your kids could or could not have it, I knew nothing about if you gave it to them through your breast milk. My doctors never told me of any of the issues that you have been describing. I am going to do some research on my end, but everything I have been through never lead me to believe my children were in any danger. My twins are 19, and I have an 18 year old and a 16 year old and they are all very healthy. And to be completely honest, I was very young when I got pregnant and never went my the eating regimen I was supposed to. After I do some research, I will let you know what I have found out.

Okay, I did a bunch of research and really couldn't find anything that said anything about birth defects in children. I did find this little articly, hopefully you can open it. I hope it calms your fears. A new child is a joy and you shouldn't need to have anything to worry about.
http://www.lifescript.com/channels/healthy_living/news_bi...

You have gotten a lot of great advice! This disease is finally being paid attention to here in the US - doctors used to think it was so rare, but in actuality it just is underdiagnosed. In western Europe you can actually get a gluten-free Big Mac!

I was diagnosed almost 10 years ago, but being on the diet for 1.5 years pretty much cleared it up for me. I go in every year or two for a follow up biopsy (a blood test will always be positive for me, but a biopsy of the lining of the intestine will show if the celia really are laying flat and diseased), and they have all come back negative - so there's hope that this could be temporary! However, keep in mind that many people have to live this lifestyle (it's more then just a diet!!) for the rest of their lives, or at least go back on it after they go off.

Your baby can NOT get this through your breastmilk. This is a heredetary condition, so I'm sorry to say that your baby is already predisposed. Breastfeeding will actually help your baby, so keep it up!!

I know you are concerned about the wheat you've eaten during your current pregnancy, but I don't think you should be - although telling a pregnant woman not to worry is kind of a waste of breath, haha. My aunt wasn't diagnosed until after both of her children were born and they are 18 yo and 20 yo, both in perfect health.

Good luck, and if you need recipes just send me a message - I made up a huge binder of tons of info, the best brands (for me at least), and LOTS of recipes. :)

J.

Congradualtions are in order concerning the baby and the answer to your physical concerns. There are lots of websites on the net that carry the answer to your cooking changes. There are herbal products that can help you with the toxins within your bodies, yes even your children. If you are interested in learning about these let me know, I know that your Dr. will be very interested.

Also, not all diseases are passed to our children, there is always a possiblity it may just pass right over them. Since they are young and you will change their diet early they may never have that sensitiviy. There is always hope!
C. C.

Hi J.,
i am A. Swift, living on a ranch in The Dalles, OR.
being in the nutrition industry for many years, i have communication with many celiac gals. the best places to get the food you need and the best supplementation, their pregnancy experiences. let me know if you would like to connect up with some of them, i am sure they would be happy to share their experiences. call me ###-###-#### (calling is the fastest way to communicate for busy people). A.

I'm not sure this will help you, but just so you won't be nearly as worried. My daughter who is now 44, has twin boys (almost 13) another son (11 next month) and an 8 year old daughter was diagnosed with Celiac (severe) and she has a heart condition. She nursed each of her children. None of the pregnancies had any problems, and she has very healthy children. One of the twins does have allergies. I just give you this information to compare to other responses. My daughter has had to do a complete life change with her eating, and exercise though. She used to be so thin, I worried, and now since she eats everything gluten free, and sticks to her diet, she looks so healthy and has gained her weight back. I just hope you do well, and that this helps in some way. I could give you her email address if you want. She has a wealth of information, and experiences she could share.