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

Celiac With Fertility Issues

KristaleeJane

Recommended Posts

KristaleeJane Contributor
KristaleeJane
Posted

Hello

I have been sick for along time and recently have been diagnosed with Celiac through Positive bloodwork and Biopsy. I have been trying to get pregnant for 9months with no luck. I have been gluten free for 1.5mths, which is not that long, but my doctor seems to think that there is nothing wrong with me.

She knows nothing about celiac disease and didn't even know that infertility can be a symptom. She told me that if after a year of trying she would then look into it.

My cycles are not 28 days they are a lot longer, usually around 35-37 days long, and she said this is normal. I really think that there is something wrong. My doctor doesn't, I am very worried.

What should I do?

Thanks

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

Celiac.com Sponsor (A8-M):


Adelle Enthusiast
Adelle
Posted

I would find another doctor!!!! I've been gluten-free for almost 2 years, and we have been TTC for 17 months. We were TURNED AWAY from 3 doctors because we were "too young to worry about having kids". We FINALLY found the infertility offices at OHSU. THEY took us seriously. Turns out we WILL need treatment, those other doctors just sucked!!

You could go for initial testing at least. For you that'd be basic bloodwork (fsh level, hormone levels, etc) and a HSG (the thing where they inject dye and take an X-ray to make sure nothing is blocked). For hubby that would be a semen analysis.

I think it would help to just have a basic workup. There might be NOTHING wrong (sometimes it just takes a while for some people), but there might be. You have a RIGHT to know either way!! Good luck!!

Cherry Tart Apprentice
Cherry Tart
Posted

Hi - Sounds like it's time to find another doctor. Not to mention, I would also recommend waiting a 6-12 months before trying to conceive. It's best to let your system heal. Your digestive tract has been compromised/damaged from years of gluten consumption. There may very well be nothing wrong with your reproductive "parts" but Celiac can affect other parts of your anatomy that impede fertility - I'm sure that's what your Dr. doesn't understand. In most cases, fertility should be restored after adhering to the gluten free diet for an extended period of time. No cheating! :) And yes, what she said about your cycle is correct - not everyone has a 28 day cycle. I know it's very disconcerting to hear that anything outside of 28 days is OK. Once your system starts to heal, your cycle duration may shorten (it did for me). I suggest finding another doctor, getting another evaluation (for peace of mind) for you/hubby, and most important of all - giving yourself time to heal.

I'm currently going through fertility treatment too. I know how frustrating it can be....

After years of speculating that my having Celiac was the problem, we discovered that my non-celiac husband has some issues. It's a slim chance but worth a try! Good luck to you ;)

AliB Enthusiast
AliB
Posted

Have a trawl on the internet and see if you can find some really good medical references that highlight this problem and the Celiac link - print them off and give them to her.

She obviously doesn't read up-to-date Celiac textbooks - although their symptom list can be limited, fertility problems will virtually always be listed.

My Mum was Celiac. She had 3 definitive markers. Diabetic at 15, anemic all her life and had me followed by a stillborn followed by 10 miscarriages!

Print this off and show her if it helps!!!!

The key is knowledge. The more you know about the disease the stronger your argument - and your confidence. Show her you know what you are talking about and just maybe she will start to pay attention. Don't let her arrogant attitude get the better of you!

I actually had a doctor just today admit that I know more about than she does. She did what I wanted and some.

Amelia01 Rookie
Amelia01
Posted

There is a definite link between untreated celiac and infertility. Unfortunately though, most doctors (and even specialized fertility clinics) believe that the correlation is only malabsorption as a cause for miscarriage. As Cherry Tart has pointed out, the entire body is affected by gluten consumption. celiac disease is an immune disorder and immune issues and infertility go hand in hand. Luckily, however, following a strict gluten-free diet may restore fertility. After 3+ years of trying and many assisted reproduction treatments (and countless investigations on both my and DH's end) we were blessed to conceive naturally after 9 months being gluten-free.

There is little to no research available on the immune system disorders due to untreated celiac disease and fertility -- but Columbia University is supposedly now holding some trials in their IVF clinic.

Don't let any doctor try to make you wait -- nothing is worse than being told to be patient and wait and see. Keep up being gluten-free and look into the preliminary testing that Adelle spoke of.

Best of wishes to you -

Amelia

KristaleeJane Contributor
KristaleeJane
Posted
  • Author

So I had my Hormones tested, and my doctor said they are fine. I am in the process of getting some of my vitamin and mineral levels checked now. I go for my physical middle of June also. I really don't know what else to do if everything comes back normal, she is going to say keep trying and I guess that is best thing to do considering I have only been gluten free for almost 2 months.

Thanks for the advise from everyone!

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    3. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    4. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Medications

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fa...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Gluten tester

      By Scott Adams · Posted

      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
×
×
  • 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.