• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Fertility Issues For Non-Celiac Gluten Intolerance
0

Rate this topic

2 posts in this topic

Recommended Posts

So I'm not pregnant, or planning to get pregnant, for a very long time, but I just got diagnosed with NCGI (though it's possible I could be celiac, I suppose, due to testing malfunctions). I was wondering if anyone with gluten sensitivity/NCGI had problems with fertility...I know it's an issue with celiac, but anything else?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


So I'm not pregnant, or planning to get pregnant, for a very long time, but I just got diagnosed with NCGI (though it's possible I could be celiac, I suppose, due to testing malfunctions). I was wondering if anyone with gluten sensitivity/NCGI had problems with fertility...I know it's an issue with celiac, but anything else?

Are you concerned because you've noticed changes in your cycle? Because that was one of the reasons that I went gluten-free to begin with. Ultimately the short answer to your question is...yes. There are many of us who have had problems with fertility with or without an official celiac diagnosis. I am self-diagnosed Celiac (my grandfather was diagnosed and I carry both a Celiac and non-celiac gluten sensitivity gene) but my blood tests were negative since I'd already started the gluten-free diet before I was tested and my doctor believes that I am NCGI. Personally, one of the reasons that I went gluten-free was to see if it would help regulate my period. Unfortunately, while my overall health improved drastically since I changed my diet. I still ended up being diagnosed with primary ovarian insufficiency (or POF-Premature Ovarian Failure as it's commonly called) at age 32.

Here's my story with regards to that. I started having trouble with irregularity when I was about 28 1/2 years old. My cycle shortened from 29 days like clockwork to every three weeks (in addition to suffering from hot flashes, terrible night sweats, loss of libido, urinary frequency and dryness). After having my blood tested a couple of times over the past three years (and coming back normal each time) I ended up getting abnormal results the last time around as I was preparing to begin trying to get pregnant. What truly indicated the POF for me was not the high FSH but the measurement of my Anti-mullerian hormones or AMH and the fact that I am not ovulating and probably haven't been for a while. Recent studies have shown AMH to be a better indicator of ovarian reserves than FSH. Normal women at my age (32) are around a 3 or 4. When tested my AMH was at 0.11 and then even lower when they re-did the test. When you get to 0 there are no egg follicles left. (When the Dr. ultrasounded my ovaries I had no follicles in my right ovary and only 3 in the left...also consistent with the diagnosis) AMH is a newer test that wasn't in use frequently three years ago...so my regular doctor wouldn't have known to use it. Currently, I am still having periods, but my FSH is above normal (though not yet fully menopausal) and both my estrogen and testosterone levels are low. I was told that my only hope of getting pregnant would be to use donor eggs and IVF since my odds were less than 2% if I was going to try to use the few remaining follicles that I have.

Fortunately, or unfortunately for me (depending on how you look at the situation) I am in a lesbian relationship which makes access to sperm extremly difficult, but access to a second uterus par for the course. In light of our situation, I have decided not to pursue IVF with egg donation at this time (Even though our HMO insurance in Illinois would have covered the vast majority of the costs! Amazing...simply amazing. Illinois is one of only 6 states to mandate infertility coverage including IVF in health insurance). If I had done the egg donation, my wife would have been my donor...but after reviewing the possible side effects of IVF we decided that we'd be better off if she carried the babies rather than me getting pregnant and risking triggering any additional auto-immune problems.

I'm sorry to throw my sob-story at you...but I needed to get it off my chest and perhaps find a way to encourage you to be your own best advocate. I was worried for years and kept hearing "you're young and healthy." from my doctors. Sure, I am young. And I'm much healthier than I've ever been...but that doesn't mean that I didn't know when something was off in my body. You are the best judge of your situation. If you have concerns, listen to your intuition and don't wait to start trying (if you can). If it is not a good time for you to be pregnant now, but you still think you want kids. Actively pursue a good relationship with your doctor and consider checking your AMH in addition to your FSH, Estradiol, and LH. The AMH levels will let you know whether or not you have a good amount of follicles in reserve. The higher your number, the "younger" your ovaries are and the more time you can wait. Blessings and good luck to you!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,169
    • Total Posts
      940,051
  • Member Statistics

    • Total Members
      66,151
    • Most Online
      3,093

    Newest Member
    Redfern16
    Joined
  • Popular Now

  • Topics

  • Posts

    • Look at carreggenan. I am a super sensitive Celiac and have the same auto immune reaction to anything made with seaweed, “the wheat of the sea”, such as MSG, carrageenan, agar and sodium alginate. The food industry is putting it in everything, even so called Misbranded gluten free foods. Even some coconut milk brands now are using it as are nut milks. It is a cheap emulsifier, so we do not have to shake things up! How about shaking up my whole body from it! You may have an iron defiency anemia not being treated or tested. Cookbook doctors treat numbers not patients clinical presentation. I have fired five doctors in eight years for stupidity and dangerous lack of clinical acumen which could have killed me. Do not be afraid to ask questions and confront doctors, you are after all the customer paying for their services.  Eat clean, meaning preparing your own foods. Stay out of restaurants! Gluten free is a joke in most restaurants if you are a celiac. And will cost you weeks of illness. Hang in there. Make bone broth, it has super vitamins and minerals and loaded with pre and probiotics. Go to Dr. Axe’s site. I only do chicken made with feet. I am allergic to beef since being bitten by a deer tick in 2011 and getting Chronic Lyme disease. The chicken feet bone broth is also loaded with calcium and is yummy. Takes a little work, but is well worth it. 😊  
    • Go to the coping section & pinned at the top is the Newbie 101 which will tell you how to prevent cc. Sorry, that's all I have for tonight as it's been a long, long day for me & I am more than ready to turn in. I'll respond further tomorrow. I'm sooooooooo glad to hear you finally have an answer!!!!! 
    • You can buy some Glutino chocolate covered wafer cookies to help with that Kit Kit addiction.
    • Thanks, I appreciate the insight. I will just play it safe and stop eating that type of granola bar. If you have any other advice or comments I would love to hear it.  Thanks so much!
    • Some of that brand are gluten-free ,  but they will say they are.  Some of their  bars are not gluten-free because they do not use gluten-free oats.     If you are eating non- gluten-free oats or products made  with them, there is a possibility that some are actually gluten-free and some aren't.  So maybe a small amount of gluten has built up until it bothered you?  Or you got lucky until recently?  For a Celiac, some people don't feel a response until  their antibodies have built up from repeated gluten exposures.     Maybe it has nothing to do with gluten...
  • Upcoming Events