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filmfreak

Please Share Your Stories, I'm So Scared

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In September of this year (2006) I was tested postive for Celiac. I went right away on the diet (cheating from time to time). For about 2 months now I have been really strict, not cheating (at least not to my knowledge). I found out 4 days ago that I am pregnant. We were not planning for this just yet, but here we are. We are THRILLED!!! Yet, I'm reading that there are many complications with being both a celiac and pregnant and it's recommended that you are on the diet for a year at least before getting preg. I'm worried about birth defects and miscarriage.

I just turned 30 in October and was having symptoms for about 8 months before I found out. I would love to hear stories from you if I should be truly worried or if there are more healthy babies out there from Celiac moms than not.

I have not seen my doctor yet (calling tomorrow) since the weekend and the holiday made it tough to get ahold of her.

Should I be more worried than happy?

-Jessica

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In September of this year (2006) I was tested postive for Celiac. I went right away on the diet (cheating from time to time). For about 2 months now I have been really strict, not cheating (at least not to my knowledge). I found out 4 days ago that I am pregnant. We were not planning for this just yet, but here we are. We are THRILLED!!! Yet, I'm reading that there are many complications with being both a celiac and pregnant and it's recommended that you are on the diet for a year at least before getting preg. I'm worried about birth defects and miscarriage.

I just turned 30 in October and was having symptoms for about 8 months before I found out. I would love to hear stories from you if I should be truly worried or if there are more healthy babies out there from Celiac moms than not.

I have not seen my doctor yet (calling tomorrow) since the weekend and the holiday made it tough to get ahold of her.

Should I be more worried than happy?

-Jessica

Congratulations! You should definitely be happy! You don't want to spend your pregnancy worried...it's not worth it to spend this amazing time that way.

There are plenty of stories out there about celiac women who have had healthy pregnancies, even before diagnosis. It is very unlikely that you will have complications, especially since you already have your diagnosis. You now know that you need to be on a gluten free diet...which is the healthiest thing you can do for this pregnancy. Take care of yourself, so that your body can take care of your baby...and enjoy being pregnant. :)

Michelle

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Congratulations! I am non-celiac gluten intolerant ... but I had 5 babies before I found out. You'll do fine. Don't cheat on the diet -- when you're pregnant or not!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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In September of this year (2006) I was tested postive for Celiac. I went right away on the diet (cheating from time to time). For about 2 months now I have been really strict, not cheating (at least not to my knowledge). I found out 4 days ago that I am pregnant. We were not planning for this just yet, but here we are. We are THRILLED!!! Yet, I'm reading that there are many complications with being both a celiac and pregnant and it's recommended that you are on the diet for a year at least before getting preg. I'm worried about birth defects and miscarriage.

I just turned 30 in October and was having symptoms for about 8 months before I found out. I would love to hear stories from you if I should be truly worried or if there are more healthy babies out there from Celiac moms than not.

I have not seen my doctor yet (calling tomorrow) since the weekend and the holiday made it tough to get ahold of her.

Should I be more worried than happy?

-Jessica

Hi Jessica, My little sister is a celiac and managed to have a healthy baby at the age of 37. She was diagnosed with celiac at the age of 1. She had no problems during her pregnancy and carried full term. Her son doesn't have celiac. Good luck and you should be happy. Wendy

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I don't have any advice (as my hubby and I don't have kids yet, hopefully we'll start trying this year).....

Just wanted to say congratulations!!!!

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Congratulations! Don't worry... be happy! I had 3 healthy babies, now healthy kids before I found out what was "wrong" with me. You'll do fine - but DO stick with the diet.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Thanks everyone for sharing. I feel more secure at times, but so worried most of the time. I wish that I had found out long before and had been on the diet for longer. I do feel healthier being on the diet; I was getting crazy "floaters" in my eyes which I read is sometimes a B12 defic. and since being on the diet they have faded quite a bit, as has my overall "better" feeling. Course, that was before I got pregnant and now I'm tired alot. No sickness yet, I'm not totally worried about that though, since my mom didn't have sickness with myself of my sister. So, thanks again for sharing. I'm sure I'll be back for more advice!!

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Guest cassidy

Congratulations.

I got pregnant (we were trying) 8 months after going gluten-free. I was feeling good so we decided that it was ok to start trying. I never cheat, but I have been glutened 3 times while being pregnant.

In the beginning I was a bit stressed and worried about all things because I didn't want to do anything to hurt the baby. Then I realized that you are pregnant for a long time and things wont' be perfect every day. There will be days when you don't eat enough green veggies or forget to take your vitamins or get glutened or don't exercise, etc, and things will be ok. I think I am better off not being stressed out then I would be if I was vigilant and made sure I led the absolute perfect life everyday. Don't get me wrong, I would never cheat on my diet or drink or smoke, but I do have some chocolate every once in a while.

I found a great prenatal by NOW. It is a capsule which my doctor said is the best way for you to get your vitamins, it is gluten-free, and the source of vitamin a is beta-carotene which you just excrete if you get too much of. If you are having any digestive symptoms I would recommend looking into digestive enzymes and probiotics. My doctor said both of those are helpful when pregnant because your body is already under stress because of the baby so it can use whatever tools you can give it to help digest/process your food. I also take dha which gives you omega 3 which is good for the baby's eyes and brain.

There are plenty of celiacs that had healthy babies when they were still eating gluten because they didn't know about the celiac yet. I think most people stress in the beginning, but almost all babies turn out fine and some of them even have mom's that don't really care about them or taking care of themselves when they are pregnant.

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Jessica, you should definitely be more happy than worried. Chances are that everything will turn out just fine especially if you adhere strictly to the diet. Many of us had healthy babies before our diagnosis, including myself. I was actually in the throes of Celiac when I got pregnant the first time. We didn't have a diagnosis so I continued eating gluten all throughout my pregnancy. I probably ate MORE gluten because I was trying to eat whole grains. My baby was born two weeks late (full term) and scored a perfect apgar. To this day she is the picture of health.

My advice to you... Don't cheat on the diet (pregnant or not). Start taking a prenatal TODAY! Try to relax and stop worrying, worrying is hard on the baby. Enjoy being pregnant as much as possible, it's such a blessing. Make sure you're getting enough grains in your diet such as whole grain brown rice, quinoa, etc.

BTW, congratulations on your pregnancy!!! That is so exciting! When are you due? My hubby and I just found out that we're pregnant as well. My due date is August 25th.


~Angie~

Gluten free since May 2004

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I had all four of my children before going gluten free (well, three pregnancies, four children!). I wouldn't worry!

Believe it or not, I was told in my early 20's I would have a 50/50 chance of ever being able to conceive a child due to endometriosis. I got married at 29, had Eileen at 30, Rhiannon at 35 and the boys (Daniel and Connor) at 37. Just goes to show you, don't listen to everything a doctor says!!

Congratulations!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Congratulations. Celiacs have healthy babies all the time. Listen to your body. Fat was giving me a lot of gas so I had to temporarily eliminate high fat foods it. Yep, Gluten Free, low fat and 2,000 calories a day.


Phyllis

Gluten Free - 30 years

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Congrats Jessica!! :D

Here's my story -- my 2nd pregnancy actually triggered my celiac. While pregnant with my son Ryan, at the five month mark I began getting really, really sick (you know what I mean). The doctors couldn't figure out what was wrong with me and, since I was pregnant, no one wanted to touch me :) Anyway - after having "D" everyday for the remainder of my pregnancy and gaining only 15 pounds total, I gave birth to a healthy son (inducted two weeks early because he was going to be a big one!). Ryan was 8 pounds 4 ounces and is now 30 pounds at 19 months. He's healthy, thriving, and totally perfect :P I was finally diagnosed with celiac two months after I gave birth and have been feeling fantastic ever since going gluten free.

So, take good care of yourself, don't cheat (bad bad bad!), and you'll be just fine. From what the doctors told me, my son pretty much sucked all of the necessary vitamins/nutrients for himself, so you may be feeling a bit more run down than usual, but know that the baby is getting what it needs.

How exciting! Being a mommy is the best thing in the world, so enjoy this special time.

Maureen


Maureen in Southern New Jersey

Diagnosed via bloodwork & biopsy in June 2005

Gluten free ever since!

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Congrats to you and your husband!! Very exciting stuff!

MY STORY:

I found out that I had Celiac Disease in Aug. of 05'. In October of 05' we started trying for a baby. By January 06, I was pregnant. So, when all is said and done, I had only been gluten-free for about 4-5 months. I was very worried like you, that I had not waited long enough for my body to heal. I worried everyday that I would lose the baby or that something bad would happen to her. Well, I read somewhere that woman that are pregnant and have celiac disease (and stick to the gluten-free diet - no cheating) that they will actually have healthier babies than normal woman (woman who are not on a gluten-free diet). So that made me feel a whole lot better.

In October, I delievered a healthy 8 pound 8 ounce girl. She scored a 9 on the APGAR, and has not had a fever, cold, or anything since she's been born. She is healthy as a horse. I am also breastfeeding and I think that helps.

Some advice, make sure to stick to the gluten free diet. No cheating. Accidents are ok -I had about 5 or 6 during the pregnancy. I used papaya enzymes for heartburn (they are wonderful!). Take your prenatals, drink lots of fluids and listen to your body. If your body tells you to slow down, slow down. It knows exactly what the baby needs.

Most importantly, have fun and don't worry. I wish you the very best during your pregnancy!! Please keep us up to date on how you are doing throughout.


Celiac Disease since August '05

Baby Samantha - born on October 27, 2006. She is healthy, smart, and beautiful.

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Congradulations! My first was born very healthy. My second was born at 29 weeks due to celiac but I had not been diagnosed or gluten free. As you can see many celiacs have had very healthy babies. Chances are you and your baby will be just fine as you have been gluten-free for awhile. Just make sure you are taking all the viatimans that you should be and stay gluten-free. If at anytime you think somthing isn't right with the baby make sure you go in imeaditly and make sure they believe you. I would if at all possible elimanate things like eating out to reduce any risk of getting contaminated. Good luck!


Myself-Age 25....I have had symptoms since at least 1998 if not since infancy (was diagnosed with malnutrition as a small child)...Positive results with gluten free diet!

Hannah-Age 5.....Has symptoms....Inconclusive blood tests....Positive diet response to both gluten free and lactose free!

Grace-Age 1.....Born at 29 weeks due to me having celiac....Has reflux and a feeding tube.

Husband-Not Celiac......has found that he does feel better when not eating allot of gluten.....is gluten free at home.

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I had two babies when I went undiagnosed. both turned out to be sickly and eventually all three of us were diagnosed with celiac at the same time. I did not have any major complications with either pregnancy, just the no energy thing & morning sickness. Both babies scored fine on the apgar after birth. it is normal to worry if you will be giving your baby a disease. I am pregnant again, after being gluten free for over a year. this pregnancy is not much different than the last two. I wonder if we will have to go through this same thing again, but in a shorter length of time. Just concentrate on sticking to the diet and not worrying so much, as there is nothing you can do to prevent celiac.


Myself & 2 children (when they were ages 20 months & 4 & I was 28) diagnosed celiac in July 2005

All Gluten-free since July 2005

My mother & 1 sister diagnosed celiac in December 2005

same sister diagnosed with IBS March 2006

1 other sister self-diagnosed celiac in February 2006

2 other sisters & 1 brother have not been tested yet

My 3rd child is gluten free, but we are not certain he is celiac

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I just recently found out that I have Celiac Disease and I've had 4 kids. All of my kids are health with the exception of my daughter having DH and I'm not sure if my other kids have Celiac or not, but they hardly ever get sick!! I had very hard pregnancies, but the babies came out fine!!

Congrats and enjoy your pregnancy!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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