Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac And Miscarriages


KFinn36

Recommended Posts

KFinn36 Newbie

I was diagnosed with Celiac Disease six or seven years ago.  I've never followed the diet for more than week at a time.

I am now 25 years old and have been in a committed relationship for two years.

About 3 months ago I found out I was pregnant.  My boyfriend and I were shocked.  We weren't trying to get pregnant.  I was actually quite devastated.  Financially we were not ready for a baby.  But as time went on we began increasingly excited.

I went and had a "professional" pregnancy test done by my primary care physician, who was the one who diagnosed me with Celiac, and he never said one thing about sticking to the Gluten Free diet to have a successful, healthy pregnancy/baby.  He was also aware that I was not following the gluten-free diet.

On August 28th my boyfriend, mother and I went for my first OBGYN appointment and ultra sound.  The doctor had informed me that I had miscarried around the 6 week mark (I was supposed to be 10+ weeks at that point). I had even asked her if it was my fault that I had miscarried because of not following the gluten-free diet and she had said no.

A week or so ago I saw something on the web about woman with untreated Celiac's having a higher percentage of miscarriages or infertility.   

 

Has anyone else had problems with this?  I don't know why my doctor or the OBGYN wouldn't have said anything to me.  If I had known that the untreated Celiac could cause a miscarriage I would have stuck to the diet like it was my job.  If anyone could add some input that'd be great.  I've been driving myself crazy the last few weeks about this.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I'm sorry you lost the baby but I am going to blunt.

 

This applies to you as you are the "undiagnosed" Celiac.  In this case, they assume that a diagnosed Celiac would be following the gluten-free diet.

 

Open Original Shared Link

 

Open Original Shared Link

 

 

 

I am going to say that I think  you are not ready to have a baby.  Until you are able to take care of your basic health needs, how can you take care of another person's needs?  Educate yourself about your disease.  It has very real health risks going untreated. 

 

Open Original Shared Link

 

Open Original Shared Link

1desperateladysaved Proficient

I have experienced a miscarriage.  Sorry, for your loss and I wish you and yours wellness in the future.

 

I have sent you a pm about it and would be willing to share experiences if you care to after that.

 

D

SkyBlue4 Apprentice

Yep, I've lost babies also.

I am so sorry for your loss. No matter how you might have felt when you first found out you were pregnant, it is clear by your post that that baby was already loved. Take care and be gentle on yourself now as you heal. 

IrishHeart Veteran

  I had to think about this post all afternoon before I answered you.

 

I am so very sorry you lost your baby.  :(

That is a tragedy and a sadness that is beyond description.

I know.  lost 5 because of undiagnosed celiac.

 

But that was 20 years ago, when I did not know I had celiac.
You know you have celiac.

was not DXEd until my 50's after I became so ill, so debilitated and stricken with

pain and suffering dozens of symptoms that I was dying. I was grateful to know what I had
and how to treat it so I could stay alive.
Really... a G F diet? that's it! wow.

 

You state you have been diagnosed with celiac for many years so, honestly, hon you should have been following the diet religiously all this time..
.

 I am just speechless, which is impossible for me (as many members on here will attest).

 

I do not know where to start, but I will try:

 

(1) you absolutely need to be G F every single day or suffer the myriad of consequences that accompany undiagnosed or untreated celiac. 

Lymphoma, lupus, rheumatoid arthritis, anemia,  various autoimmune diseases. osteoporosis....

infertility and miscarriages. There are so many more--!!

please, READ the information that Karen has posted for you.

 

(2) you are telling us that the doctor who diagnosed you with Celiac you did not tell you to follow a strict G F diet?
This is strange and confusing ---as it is the only treatment for C D.

 

(3) you are the only one who can control the symptoms of celiac. Start educating yourself on the G F diet, what celiac disease
is and the  appropriate follow up care you should have.

 

(4) FIND A NEW DOCTOR WHO KNOWS

WHAT CELIAC IS. If what you say about your PCP and GYN is true, they are clueless.

 

(5)Read this book:

 

Real Life With Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This disease is nothing to mess with.

 

You need to change your life right now, hon.

Here is the Newbie 101 thread for "newly" diagnosed celiacs. Get started ASAP

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I wish you all the best. Heal and be well.  Maybe you should wait a year or so to get your body straightened out

before getting pregnant again..

This will give you the best chance for healthy babies in the future.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,982
    • Most Online (within 30 mins)
      7,748

    Amy Pasquantonio
    Newest Member
    Amy Pasquantonio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...