Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pregnant And Celiac Testing


bincongo

Recommended Posts

bincongo Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

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.

bincongo Contributor

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.

SGWhiskers Collaborator

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.

Emilushka Contributor

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.

bincongo Contributor

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.

Skylark Collaborator

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 Open Original Shared Link There's a number on there somewhere for US orders.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

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.

SGWhiskers Collaborator

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.