Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Fertility Issues For Non-Celiac Gluten Intolerance
0

2 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


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!

0

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
      103,380
    • Total Posts
      917,562
  • Topics

  • Posts

    • Newbie: mother to coeliac kids
      If uncooked, he might have difficulty digesting them because eating ANYTHING with a Marsh Stage 4 gut is bound to hurt.    If pickled, he might be reacting to any of the ingrediants even though they could be gluten free.   Often, celiacs develop several food intolerances.  Lactose intolerance is the most common.   I'd recommend keeping a food diary and well-cooked stews, soups for a few days or weeks until his symptoms improve.   Good Luck!  
    • Newbie: mother to coeliac kids
      Research indicates that the celiac disease blood test results do not necessarily correlate with intestinal damage.  My blood tests were "barely positive" yet I had a Marsh Stage 3B (moderate to severe damage).   But that's not important.  Your boy's health is more important!   I can see why he is suffering so much.  The good news is that he should feel well much faster because he is young.  My heart goes out to you and your family!  
    • Newbie: mother to coeliac kids
      Sorry, but I would have to remind you and those who are newbies, that a whole foods, well-cooked diet is probably best.  Avoid all processed foods.  If you have severe intestinal damage, the villi tips are so damaged (or non-existent) that they can not release all the necessary enzymes, etc. to help a person digest and absorb food well or barely!!!  Many celiacs are lactose intolerant until healing occurs (for life if you are genetically lactose intolerant like many Asians, for example).  Many celiacs have developed additional foods intolerances, so it is recommended that you keep a food and symptom journal.   Some folks might be corn intolerant and other might have issues with nightshades (like potatoes).  Others might have issues with even a good veggie like cauliflower.  I personally can not digest cauliflower after a good glutening for some unknown wacky reason.  What I am trying to say, is that everyone has to figure it out on their own because we all have different issues related to celiac damage.  Lactose intolerance is the most common and a good place to start especially with SEVERE intestinal damage like Marsh Stage 4.   
    • need advice
      Welcome!  The only way to find out if you have celiac disease is to get tested.  Here are the tests that your GP can order for you: http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ THIS IS IMPORTANT!  YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE.  THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY A GI.   Anxiety can be a symptom for celiac disease.  Please do some more research so that you can get a proper diagnosis.  Can you go gluten free?  Sure.  That's what my hubby did 15 years ago per the very poor advice of my allergist and his GP.   Twelve years later, I was diagnosed.  Weird, huh?  Anyway, hubby will tell you that I get way more support.  He get's a lot of eye rolling.  Plus, our kid (and my folks and siblings) get screened every few years because I have a diagnosis.  My kid gets tested every couple of years even without symptoms because you can be symptom free and still have celiac disease.  celiac disease is genetic.   It is an autoimmune disorder triggered by gluten.  It is the only autoimmune disorder that is triggered by something known.  If you have RA, MS or Lupus, for example, doctors do not know what actually triggers these other autoimmune disorders.   So, Keep researching.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,519
    • Most Online
      1,763

    Newest Member
    lesleeann
    Joined