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bincongo

Pregnant And Celiac Testing

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I am a new Celiac and now my sister has found out she has the gene. My daughter is 8 months pregnant and it took her 5 years to get pregnant. I want her to have gene testing and Celiac testing. Is there any reason this should wait until after she gives birth. I know the gene testing wouldn't be affected but what about affecting the results of the Celiac testing.


Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac

Lactose intolerant discovered August 2010

Hypothyroid Dx 2009. Sleep Apnea 2005

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If she is eating gluten, then she can have the regular antibody bloodwork done now. She can have the gene test done regardless, but many people carry the gene without it being activated (celiac disease requires both the gene and a trigger to activate it) so it won't really tell her if she has it or not. (To top it off, the US, especially, only tests for two genes, and none of the others known to be linked to celiac. So, she could test negative, but still actually have a gene that would give her the possibility of having it. This is why I think genetic testing for celiac is worthless.)

If she's gluten free, she should stay that way - ideally until she is done breastfeeding - and then decide if she wants to eat enough gluten for long enough to damage her intestines to find antibodies on a blood test.

If she strongly suspects she might have celiac disease, I would encourage her to go gluten free for the pregnancy and breastfeeding and decide what she wants to do from there. But that's just my opinion of the tradeoff of the risks of eating gluten if celiac while being pregnant.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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If she is eating gluten, then she can have the regular antibody bloodwork done now. She can have the gene test done regardless, but many people carry the gene without it being activated (celiac disease requires both the gene and a trigger to activate it) so it won't really tell her if she has it or not. (To top it off, the US, especially, only tests for two genes, and none of the others known to be linked to celiac. So, she could test negative, but still actually have a gene that would give her the possibility of having it. This is why I think genetic testing for celiac is worthless.)

If she's gluten free, she should stay that way - ideally until she is done breastfeeding - and then decide if she wants to eat enough gluten for long enough to damage her intestines to find antibodies on a blood test.

If she strongly suspects she might have celiac disease, I would encourage her to go gluten free for the pregnancy and breastfeeding and decide what she wants to do from there. But that's just my opinion of the tradeoff of the risks of eating gluten if celiac while being pregnant.

She doesn't think she has Celiac but I am not convinced that is true because of her long history of "stomach issues" and her infertility. I just want her to have the gene testing done and then maybe the autoimmune tests. She is not gluten free. I was just wondering if pregnancy in any way would affect the results of any autoimmune response that might show up in blood work. She might be hesitant because she isn't sure how much it will cost.


Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac

Lactose intolerant discovered August 2010

Hypothyroid Dx 2009. Sleep Apnea 2005

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I know of no reason why pregnancy would affect the results of the blood testing. There would certainly be no reason it would cause a false positive. Regarding cost, the blood testing is going to be the most cost effective means to a diagnosis. If ou can talk her into getting the testing done before the baby is born, there are a few advantages.

1) She has more time now than after the baby is born.

2) She is already going to the doctor's office on a regular basis. Maybe the OB would feel comfortable ordering the tests as long as you felt comfortable interpreting them.

3) Gluten antibodies attack the placenta.

4) She will get the baby off on a good start right away

Congrats on the grand baby.

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There's a possibility that she might come up with a false negative on blood testing because she's pregnant and her blood volume has increased (which is normal and helpful in pregnancy, but less helpful for testing for Celiac Disease). I don't know if the volume increase is enough to significantly alter the potential results - that's a question for her doctors. They may also be unsure. I'd say it sounds like it's worth it to go for the testing. The company I worked with quoted me about $300 out of pocket for the full cost of the blood test, but my insurance ended up paying in full.

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After waiting 5 years and my daughter thinking she could never get pregnant, I have to say we are very happy for her. She and her husband adopted a little baby boy last year because they thought they would never have children.

If gluten attacks the placenta, can this be a complication?

Right now we don't know what we are going to do. She has a doctors appointment this week I believe and she may be able to get something ordered but if it costs 3-4 hundred dollars then we don't know what we will do. I would assume that the antibody testing cost less than gene testing.


Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac

Lactose intolerant discovered August 2010

Hypothyroid Dx 2009. Sleep Apnea 2005

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If money is an issue for the testing, she can simply go gluten-free. It's good to know if you're celiac, but the pregnancy is much more important than a firm diagnosis. She can always challenge later. Also, some cities have celiac centers that screen for free. You could look into that. Biocard also might be a more affordable option. Here's the Canadian website http://celiachometest.com/. There's a number on there somewhere for US orders.

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If gluten attacks the placenta, can this be a complication?

Yes, and this is why, if I were going through it, I would just go gluten free, and test later (either after birth or after finishing breastfeeding). To me, the cost/benefit ratio weighs much more heavily on the "protect the baby" side.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I agree with tarnalberry as long as your daughter would commit to being gluten free without "proof" she is celiac. If she is wishy washy with the diet, then she might be better off getting the blood test right away and then committing. If she is worried about her baby needing the nutrients in wheat, assure her it is not necessary. There is overlap of these nutrients in other foods and she takes a prenatal anyway.

I would take what ever route gets her off gluten asap. The gluten-free diet does not need to contain the high cost substitute mixes and breads. An old fashioned home cooked meat, potatoes, veggies, and fruit diet is very healthy. BellyBar chewable prenatals are gluten free.

She will probably want to stay gluten free while she nurses. There are two studies floating around that indicate suggest an ideal age to introduce gluten to an infant. One says 4-6 months, another says 6-9 months. Also, vaginal delivery reduces the chances of celiac as does breast feeding. None of these things are preventative, but they might shift the odds with the baby.

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