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

Need Calming Down - 6 Weeks Pregnant And Just Learned Of Celiac Miscarriage Connection


starstate31

Recommended Posts

starstate31 Newbie

Hi everyone - I have Celiac disease and just discovered this forum and am hoping others with experience can help me. My husband and I recently went through IVF and I am now 6 1/2 weeks pregnant...I have my 7 week ultrasound on Thurs and we hope everything is still okay by that point. Ironically, the IVF was not because of me having fertility problems..the only issues that showed up were male factor. My tests all turned out fine, my ovarian reserve is fine, etc (I'm 31).

BUT, especially because we invested so much in IVF, now that I know Celiacs have a greater chance of miscarriage, I'm freaking out.

I have been on a gluten-free diet since Oct of 2009 (I was diagnosed in Sept 2009). However, I am not overly strict, as in if an ingredient just says "spices" I still usually eat it. I do have my own toaster, I never "cheat" as far as just flat-out eating bread or anything. But I go out to eat, eat at other people's houses and don't inquire into sauces or spices as much as I should.

I will certainly make a better effort at being more strict going forward, but I'm super worried about the damage I've potentially already done in this last 4 weeks that the embryo has been in me. I have had occassional gastro-intestinal distress during this time, so I know I got some gluten, but I can't say how many times I've been "glutened" for sure.

Anyone know how much gluten you have to eat to increase your chance of miscarriage/birth defect? Anyone have a similar experience and their pregnancy turned out fine? Thank you!


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I am sorry not to be able to answer any of your questions, but as the old saying goes, "don't cry over spilt milk." Just don't spill any more :D Be very strict from here on out and you will probably do just fine.

GFRPH Newbie

Hi everyone - I have Celiac disease and just discovered this forum and am hoping others with experience can help me. My husband and I recently went through IVF and I am now 6 1/2 weeks pregnant...I have my 7 week ultrasound on Thurs and we hope everything is still okay by that point. Ironically, the IVF was not because of me having fertility problems..the only issues that showed up were male factor. My tests all turned out fine, my ovarian reserve is fine, etc (I'm 31).

BUT, especially because we invested so much in IVF, now that I know Celiacs have a greater chance of miscarriage, I'm freaking out.

I have been on a gluten-free diet since Oct of 2009 (I was diagnosed in Sept 2009). However, I am not overly strict, as in if an ingredient just says "spices" I still usually eat it. I do have my own toaster, I never "cheat" as far as just flat-out eating bread or anything. But I go out to eat, eat at other people's houses and don't inquire into sauces or spices as much as I should.

I will certainly make a better effort at being more strict going forward, but I'm super worried about the damage I've potentially already done in this last 4 weeks that the embryo has been in me. I have had occassional gastro-intestinal distress during this time, so I know I got some gluten, but I can't say how many times I've been "glutened" for sure.

Anyone know how much gluten you have to eat to increase your chance of miscarriage/birth defect? Anyone have a similar experience and their pregnancy turned out fine? Thank you!

If it makes you feel any better, plenty of women with Celiac disease have had healthy babies. I've had two healthy babies. In fact, I was 8 weeks pregnant when I underwent the upper endoscopy. So, I wasn't even on a gluten-free diet until 8 weeks pregnant. I had zero complications and she's as healthy as can be. Good luck and congratulations!

Skylark Collaborator

Yes, don't worry about what's past. Your baby is fine so far and now you can straighten out your diet and keep him/her healthy! There are plenty of celiacs who have delivered healthy babies or half of us wouldn't be here in the first place. :lol: If you need any help with the stricter diet, be sure and ask.

dilettantesteph Collaborator

I had two children while plenty sick with celiac but still undiagnosed. I didn't have any problems with the pregnancies which were celiac related. I had problems with my first child from a poorly performed amniocentesis procedure, but that's it. With that child I also ate lots of gluten as they kept telling me that I had to gain more weight. Certainly if you are gluten free you should do very well. Congratulations!

starstate31 Newbie

Thanks everyone! I do feel better. I did more research and it does seem that all the studies that show a high rate of miscarriage are when the mother is continuously eating gluten - not just small amounts here and there. And as the replies show, even if the mother IS eating a lot of gluten, it doesn't guarantee a bad pregnancy. Of course, it's better to be safe and strict on the diet, which I am definitely doing now!

psawyer Proficient

I am not overly strict, as in if an ingredient just says "spices" I still usually eat it.

Slightly off topic: When the word "spices" appears in an ingredient list, you can be assured that no grain product of any type is hidden in that ingredient. Grains are not spices.

Many people new to the diet confuse spices and seasonings. They are not the same thing. Seasonings can hide gluten in the form of barley, although it is very rare.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

As everyone said - try to not worry about what you can't change, and be strict from here on out. It may be worth while to have your doc/midwife check your vitamin levels, but a good care provider will do so on your first visit.

Good luck and may your pregnancy be smooth sailing! :)

  • 3 months later...
Angels Newbie

Hi everyone - I have Celiac disease and just discovered this forum and am hoping others with experience can help me. My husband and I recently went through IVF and I am now 6 1/2 weeks pregnant...I have my 7 week ultrasound on Thurs and we hope everything is still okay by that point. Ironically, the IVF was not because of me having fertility problems..the only issues that showed up were male factor. My tests all turned out fine, my ovarian reserve is fine, etc (I'm 31).

BUT, especially because we invested so much in IVF, now that I know Celiacs have a greater chance of miscarriage, I'm freaking out.

I have been on a gluten-free diet since Oct of 2009 (I was diagnosed in Sept 2009). However, I am not overly strict, as in if an ingredient just says "spices" I still usually eat it. I do have my own toaster, I never "cheat" as far as just flat-out eating bread or anything. But I go out to eat, eat at other people's houses and don't inquire into sauces or spices as much as I should.

I will certainly make a better effort at being more strict going forward, but I'm super worried about the damage I've potentially already done in this last 4 weeks that the embryo has been in me. I have had occassional gastro-intestinal distress during this time, so I know I got some gluten, but I can't say how many times I've been "glutened" for sure.

Anyone know how much gluten you have to eat to increase your chance of miscarriage/birth defect? Anyone have a similar experience and their pregnancy turned out fine? Thank you!

Hi there, I am currently 15 weeks pregnant and am trying my best to stay on a gluten free diet, I do understand the concerns you have, as I have them as well, wondering if small amounts of gluten will cause miscarriage and after how many weeks are we still at risk. I think if we stay away from obvious sources of gluten we will be fine, unfourtanley there are so many hidden sources, those are the ones that keep me worried, good luck and please share how you are doing.

tarnalberry Community Regular

There is no way to know if small amounts of gluten will cause you a miscarriage. We do know that keeping the immune response active increases the risk of miscarriage, but whether or not that means you will actually have one, no one can say.

The hidden sources ARE difficult. That's one reason eating simple, whole, naturally gluten free foods is the best way to go; then there are no hidden ingredients.

K8ling Enthusiast

I was undiagnosed when I had my son... he's healthy and happy and 2.5 now. I am currently pregnant with my 2nd baby, 7th pregnancy... I DID have a series of miscarriages but it was NOT due to my Celiac. I think you should relax and enjoy your pregnancy. Be aware, but not overly worried :).

domesticactivist Collaborator

Congratulations! Like they all said - you're doing your best to be a good mama from the very start! (So many moms don't even know they are pregnant yet at 7 weeks.) I don't see any reason why your baby would be harmed from you having celiac disease, especially with you being careful about your diet now. If the human race were so fragile, no one would have celiac disease thanks to its genetic component! I know it's easier said than done, but try to relax and enjoy your pregnancy. The less stress you put on the situation, the healthier and happier you and your baby will be :)

Angels Newbie

It is nice to hear that others have had successful pregnancy with Celiac, make it easier to sleep at night, with being 15 weeks pregnant, I never had any systoms when exposed to gluten, so at times I have no clue if I am getting gluten by mistake, one thing that I stress over is the Natural Flavor ingredient on labels, does anyone know if it pretains to candy and yogurt, I would doubt there is any gluten in these, or V8 juice is another. What I see on the internet is that natural flavor is safe. any thoughts on this one?

psawyer Proficient

It is possible for gluten to hide in flavoring, but it almost never does. Wheat, if present, will always be explicitly declared. The possible concern is barley.

Shelley Case, RD, in her book Gluten-Free Diet: A Comprehensive Resource Guide says,

It would be rare to find a "natural or artificial flavoring" containing gluten because: (a) hydrolyzed wheat protein cannot be hidden under the term "flavor," and (B) barley malt extract or barley malt flavoring is almost always declared as "barley malt extract" or "barley malt flavoring." For this reason, most experts do not restrict natural and artificial flavorings in the gluten-free diet.

It's not something I worry about.

celiacindiana Newbie

Please try your best not to stress sweetheart! But as pregnant moms, we constantly worry! I have had 3 pregnancies and probably had full blown celiac disease the whole time but everything went ok. All my kids were small for size (IUGR) and did better out of the womb at the end of the pregnancies so I delivered them 1-2 weeks early. Daughter was 5 lbs, 13 oz, middle son was 6 lbs, 9 oz, and baby boy was 5 lbs, 7 oz. I was diagnosed last year after getting really sick at the end of my pregnancy. AGAIN...I ate gluten the ENTIRE pregnancy cause I had NO clue I had celiac. I was first in my family diagnosed. Now my sons have come back with DQ2 & DQ8 genes so they are gluten free now. Good Luck to you! If I ate gluten EVERY day, you will be ok I'm sure with just a little bit!

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):
  • 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.