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Anyone Ttc?
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14 posts in this topic

I'm wondering if any of my fellow Celiacs out there are trying to conceive or recently became pregnant? We should follow along with each other's experiences.

My husband and I plan to TTC this fall. I can't help but wonder if my body is fully healed (been gluten-free since December 2004 diagnosis), even though I have been feeling really great for 6 months. Also, everytime I have a reaction from accidental gluten ingestion, I think about how bad it would be to be "glutened" like that while pregnant.

Share your story/experiences. :D

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Well, we've been thinking about it, but are not up to it yet. FWIW, I was not gluten-free during my pregnancy 4 yrs ago and was very celiac (can one be "very" celiac?). Oddly, I instinctively went off grains the first 3 months, ate erratically the middle 3, and felt better than I had in YEARS. Don't ask me about the last 3 months of preg, they were filled with chocolate cake :P

I would like to wait also til my body is more healed before ttc. But then, I've done it once before, and it all worked out, so.....who knows.

Good luck and have fun :D

Merika

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Anya,

We started ttc after I was gluten-free for 6 months. It took us another 7 months to get pg and now the baby is due in 3 weeks. Here is what I have learned so far.

Get used to eating gluten-free crackers and bread. I never ate any and then I had really bad morning sickness for the first 20 wks. I ate gluten-free bread and crackers but I think they made me sick just because I wasn't used to eating them at all. I couldn't tolerate fruit or veggies so that was a hard time.

Let your doctor know ahead of time. They will give you some vitamins and all of that. My GI doctor said that I was at more of a risk of having a baby with neuro tubal defects because of Celiac so taking folic acid and my vitimins were especially important. Start now on those.

I was also told not to eat any of the hospital food which I don't understand I figure if Mcdonalds can offer me something that surely a hospital could but that might just be our hospital. I was also told not to eat out so that I didn't eat any gluten by accident. I started out doing okay but lately I have been eating out more. I would guess during the first trimester that would be good advice and after the baby is bigger and stronger eating out would be okay. I still am careful on what I eat but anytime you eat out there is a risk.

My doctor also ordered an extra ultrasound at around 27 wks to make sure the baby was growing properly and her organs were forming okay.

My doctor didn't know too much about celiac so she sent me to a GI they told me that I really needed to see a nutriounist (sp?) but I haven't gone yet. I am guessing I should because I will be breastfeeding too. But she did seem to take extra caution with me. I think partly because of celiac and partly because I was so sick at first. That made me feel better so find a doctor that you really get along with. You will be seeing them a lot.

I hope that helps and good luck TTC!

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KayJay,

oooh, how exciting, you're about to have a baby, lalalala.... :D Bummer about the morning sickness

Recent studies have shown that there is no extra risk for babies of celiac moms. None, zero, nada, zip. There MAY be an increased risk of EARLY miscarriage among non gluten-free celiac moms. But once past that, the baby will be fine.

You're right about the hospital - it's notorious for feeding gluten-free moms gluten. Stupid hospitals, they should know better!

Merika

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Thanks for posting your experiences! It's helpful to hear how things have gone for other Celiac moms and moms-to-be. I hope we get a few more ladies in on this topic!

KayJay, thanks for the tipcs. Good luck and keep us posted when you have news of your baby's arrival.

I'll have been gluten-free for 10-11 mos. when we plan to start TTC. One reason (there are others) we're waiting until this fall is because I feel like I'm still getting a handle on the gluten-free way of life. Sometimes I feel neurotic with all of my label reading and question-asking at friends' houses, but I know it's a necessary part of maintaining my health. And when I'm not diligent about label-reading, I often pay a price the next day...I'm learning my lesson.

I've also heard that it's mostly non-gluten-free celiacs that have shown any fertility or pregnancy problems, so I shouldn't have much cause for my concern. But I can't help worrying, especially since I've read that it varies from person to person on how long it can take the body to repair itself after going gluten-free. Since there aren't exact, official figures, I'm guessing that a year on the gluten-free diet would give my body plenty of recovery time.

Anya

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After being gluten-free for exactly one year I got a positive pregnancy test. I am now 7 weeks. My RE really didn't know anything about it, but the ob does.

I do know that another group - Gluten Intolerance Group - has a hospital packet you can order before you go to deliver.

It was a very long road for us - I basically had gotten to the point where I didn't have a period anymore. With acupuncture & a gluten-free diet I'm happily expecting! (and injectable fertility drugs ;) )

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Roxyk- What is in that packet?

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KayJay - I don't actually know what is in the packet - I am just sending in my order now. I will post as soon as I get it to let you all know if it is worth it!

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Anya-

Good luck TTC! My husband and I are going to start trying next month as well. We have been working up the nerve to try for quite a while now, but after an inconclusive test last month we were both surprisingly disappointed to find out I wasn't pregnant. So we decided that now is the time! :D I've been gluten free for about a year and feel pretty well healed. I wanted to let you know...when you start TTC be sure to take your Folic Acid! Folic Acid reduces the chance of neural defects by 70% if present at the time of conception and in the first two weeks of pregnancy and since women with celiac disease don't absorb as well it is especially important to make sure you are getting enough. The body gets rid of excess Folic Acid in urine so it is recomended women with celiac disease take 200% of the daily recomended.

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cgilsing,

Good luck with your quest to TTC! I definitely hear you on the folic acid topic. I've been taking prenatal vitamins for a few weeks now, even though we aren't going to try until probably early November. I figured it couldn't hurt to prepare my body far in advance, plus these vitamins have some calcium (my regular multi didn't) and I know I probably don't get enough of that in general.

Keep us posted when you're pg! :)

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Hi everyone!

Thanks for all the great info! My husband and I were TTC, but after my recent diagnosis with celiac disease we have abandoned the mission for now. From all your info, I gather that I should wait until I am feeling significantly better.

As for folic acid and pre-natal vitamins, what kind do you take? I heard that certain medicines and vitamins can contain gluten. Who should I talk to about this? A nutritionist? My GI or GYN doctor?

:) Jen

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My husband and I were TTC, but after my recent diagnosis with celiac disease we have abandoned the mission for now.  From all your info, I gather that I should wait until I am feeling significantly better. 

<{POST_SNAPBACK}>

Oh, phooh, it's whatever you feel like are up to. If you feel geared up for preg, go for it. If you are tired and exhausted and can't imagine carrying an extra 30 pounds and having weird dietary cravings, then wait :)

Folic acid is recommended to all women ttc, because it's effect is greatest between 0-4 months of preg, and once you've realized you're preg, you've missed a big part of that window. Just make sure the one you get is gluten-free (read the label and call the company).

Good luck and have fun! :D

Merika

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Hi Ladies,

I'm glad I found your posts. I have been TTC for 5 years, with 1 very early m/c. I did not know I was celiac disease until last year, and have now been gluten-free since August 04 and have noticed a difference in my cycles. Unfortunately I can't say for sure if celiac disease played a role in my infertility or not, but my age is going to definately be a factor now (I'm 42).

Good luck to everyone.

LauraY

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Oh wow, I'm so glad this thread exists. I'm terrified of figuring out pregnancy and such as is without the Celiac complications and then with them added...

That's IF we can get pregnant. AND my GP advised avoiding soy because I'm small and it lengthens my cycles by about 20 days (but is otherwise great and delicious. Sigh.) and it's in EVERYTHING gluten-free.

This thread is from 2005 but is anybody else currently TTC?

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    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
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