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Celiac And 4 Months Pregnant
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I'm 4 months pregnant and have been gluten-free 10 yrs. Does anyone know when and how do you test your baby for celiac disease? While I do have an excellent OBGYN, I'm assuming she wouldnt know much about this. Please share any knowledge/experience.........Thanks!!

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I'm 4 months pregnant and have been gluten-free 10 yrs. Does anyone know when and how do you test your baby for celiac disease? While I do have an excellent OBGYN, I'm assuming she wouldnt know much about this. Please share any knowledge/experience.........Thanks!!

I am 4.5 months pregnant and this is what I have concluded from talking with my Dr. and reading online: when your baby is first born you can do the gene test which consists of swabbing its mouth with a cotton ball and sending it off for testing. This way if the baby does have the celiac gene, then you will know to watch for signs once gluten is introduced into the diet. If the baby does not have the gene, then you will know that it will not be an issue. I had the gene tests years ago and it was very simple. The only drawback is that it is a little pricey and most insurances do not pay for it. Anyway, that is what I plan to do. Hope this helps!

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Another option outside of gene testing is to be very aware of when you introduce gluten into your little one's diet. Look for the same things you would look for in yourself, changes in bowel habits, signs of discomfort, changes in appetite. The current recs are 5-7 months of age. They say if you do it sooner, their intestines aren't mature enough and it increases their risk of developing allergies/celiac. They say if you do it later, I forget why but it also increases the risk. If you do opt to do this, I would take your baby in for a blood test about a month or two after you introduce gluten - just to be sure that all is clear. Sometimes little ones show no overt symptoms at all. Adults do the same as you probably know.

On the other hand, no one says you have to introduce gluten...

And breastfeeding has protective effects against Celiac according to a couple of decades of research.

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I've forgotten to check the responses to my question from August. Thank you for your replies. I'm still wondering if anyone else can add to this, based on their own experience? Now, Im 6 months pregnant and still unsure about when and even if to test my baby. I will not be breastfeeding. Does anyone know which formula is good? Or without gluten? Im not sure what formula would be safe to use if, in fact, my baby does have celiac disease.

Also, when should I give my baby that gene test? What is the name for it? How much will it cost?

Any help would be greatly appreciated! Thank you!

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I've forgotten to check the responses to my question from August. Thank you for your replies. I'm still wondering if anyone else can add to this, based on their own experience? Now, Im 6 months pregnant and still unsure about when and even if to test my baby. I will not be breastfeeding. Does anyone know which formula is good? Or without gluten? Im not sure what formula would be safe to use if, in fact, my baby does have celiac disease.

Also, when should I give my baby that gene test? What is the name for it? How much will it cost?

Any help would be greatly appreciated! Thank you!

Hi mandigirl~

I just found out I'm pregnant and I've been wondering the same questions. I plan to have a gene test done on my baby just to see which gene I pass along. I know it will either be a celiac gene or a gluten sensitive gene, so either way - I'll most likely avoid giving my child gluten whether they show symptoms or not. My husband hasn't been tested (and won't) so that info will be interesting to learn from our child as well.

I actually did the cotton swab gene test myself as part of a complete panel through www.enterolab.com. It's called the "Gene Test for Gluten Sensitivity/Celiac Sprue". When ordered seperately it is $149. Click on "Pricing and Information about Tests" and scroll down to read more about what they offer and how they work. If you have more questions, they are really good about answering the phone and they typically take the time to make sure you really do understand what they tell you. Of course, any doctor can do a gene analysis as well.

I plan to breastfeed so I don't know about gluten free formulas. I hope you'll reconsider breastfeeding your child as well - if, of course, you are able to. (I know some mothers are not.) It makes even more sense to breastfeed your child if it's possible they could have a gluten sensitive gene or a celiac gene. If you are still interested in gluten-free forumlas, I've read a few other threads on this forum - just do a quick search and I'm sure you'll find what you're looking for. I hope this helps a little bit. Congrats to you - I wish you all the best! :)

~Lisa

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My husband, daughter and I all have Celiac so I am not planning on introducing gluten to this little guy at all!

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My husband, daughter and I all have Celiac so I am not planning on introducing gluten to this little guy at all!

Wow... I've never met anyone besides me and my sister who has Celiac... That's really cool that your husband does too.

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If the baby does not have the gene, then you will know that it will not be an issue.

Actually, this is not true. There are people who have biopsy-diagnosed celiac who do NOT have either of the 2 genes considered in the US to be associated with celiac.

There are another 5 genes that are considered to be associated with celiac/gluten intolerance in both Europe and Asia.

Also, there are a tremendous number of people (on this board, even!) who are "only" gluten intolerant who have gluten-caused reactions and systemic damage (permanent, for some) every bit as severe as celiac.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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